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Wednesday, January 5th 2011 - 02:32:49 PM |
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Fady [e] |
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Hey guys,
I just wanna say that you are really heroes.
Just Keep smiling.
I wish you all a long and happy life. |
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Wednesday, December 15th 2010 - 09:08:01 AM |
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azmi [e] |
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my step daughter has thalaseamia major i love my daughter because i am not her real father i learn about every aspect of trasfusion i care my daugter both of my eyes i give to message to my community for hazard of thalaseamia finaly i thanks for you creates this type of web god bless you |
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Friday, October 15th 2010 - 09:25:42 AM |
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Lee [e] [h] |
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Monday, August 2nd 2010 - 01:46:29 PM |
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Saturday, April 17th 2010 - 09:34:00 AM |
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pramila [e] |
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There is the first thalassemia society in mauritius since July 2009, we haven't done much yet, there about 60 patients living with thalassemia with different age group.
most of the patients have treatement problem with our hospital, as many doctors do not know about thalassemia.
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Thursday, April 1st 2010 - 10:09:46 PM |
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Guiselle Arley [e] |
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Quiero saber de usted, contactarlo pues mi hija tiene Talasemia Mayor y necesito que me orienten |
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Monday, March 22nd 2010 - 02:56:07 PM |
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marjorie [e] |
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i want to join because i want to be well informed my nephew has thalassemia ang constantly receiving blood transfusion.,im so worried about his health. |
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Tuesday, March 16th 2010 - 08:05:25 PM |
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Tuesday, February 16th 2010 - 01:50:44 PM |
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Saturday, November 21st 2009 - 05:21:18 PM |
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rosa garcia [e] |
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Hi,my name is Rosa, I am 43. I recently had a baby, my pregnancy was full of complications. The major one being anemia opened doors to a lot of digging.I am very interested in your web n also very grateful to find all this information you have so graciously posted. though they are not sure that I have this disorder I have been treated for it and as soon as treatment stopped all the symptoms have returned, which makes me more interested in researching this disorder.Thank you n God bless you in your daily battle. |
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Thursday, November 12th 2009 - 03:33:01 PM |
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Miranda [e] [h] |
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Friday, October 9th 2009 - 05:12:45 PM |
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Timothy [e] [h] |
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Sunday, September 20th 2009 - 05:45:32 PM |
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Disha [e] |
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DEAR LISA,
M A MAJOR THALASSEMIC. WHENEVER I GET MY BLOOD TRANSFUSIONS, I JUST THINK ABOUT YOU AND I GET FAST RELIEF FROM MY PAINS...........JUST B'COZ OF YOU. YOU ARE OUE REAL POWER. WE CAN NEVER FORGET YOU.
WITH LOTS AND LOTS OF LOVE
DISHA |
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Thursday, September 10th 2009 - 10:20:34 PM |
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Tintin Bernal [e] |
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How can I join your group?
I was diagnosed with Thalassemia. |
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Monday, June 8th 2009 - 01:24:14 AM |
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Dr N.Venkateswara Rao, M.B.B.,S. [e] [h] |
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Your work in the field of thalassemia, and the way in which you are making aware of this condition is really apprecaible. Thank you for your work
Best wishes
Dr Rao |
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Monday, May 4th 2009 - 01:08:38 AM |
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Kim Hartley [e] [h] |
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Hi,
My name is Kim and my husband name is Doug. He is NJ state chairman for the Elk's Camp Moore.Together they are hosting a fund raiser by taking a plunge into the Atlantic Ocean in March (FREEZING!!)to help raise money for research and awareness of this genetic blood disorder.Please visit his website and help him, help you and million others who suffer from Cooly's Anemia.
Please visit him at:
http://www.firstgiving.com/douglashartley
Wishing you health and happiness
God Bless
Kim Hartley |
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Monday, January 26th 2009 - 07:29:54 PM |
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Kim Hartley [e] [h] |
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Hi, my name is Kim and my husband is Doug. He is the NJ state chairman for special needs children. Elks Camp Moore, along with Doug is doing a fund raise for the research and cure for Cooley's Anemia.These are very special people with a heart of gold. We can sympathize with your ongoing fight of this blood disorder. Thanks for the website to bring more attention to this genetic blood disorder. Please visit his website: http://www.firstgiving.com/douglashartley and help him, help you in anyway you can.
They are actually going to dive into the Atlantic Ocean in March, (FREEZING!!)to help raise money and bring awareness to Cooley's Anemia.
Wishing you health and happiness
God Bless
Kim hartley
Wi |
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Monday, January 26th 2009 - 07:19:49 PM |
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Rickey Lee Watson [e] [h] |
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My friend my heart, love and support goes out to you and your family for your bravery.
I am a Nashville Recording Artist with a great big heart for people , today is the first time i have heard about this Disorder after reading your story my eyes welled up with tears and it took allot to hold back the tears, May God Bless
you and send all the Angels it will take to help you bring worldwide awareness to educate the other families who may or may not know they are carrying this to their Children.
Please let me know what we can do to help you get the word out? Together we can be the voice to be heard.
God Bless
Rickey Lee Watson
Redtail Records & Recordings
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Sunday, January 4th 2009 - 04:50:08 PM |
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Teodora [e] |
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Hi,i have thal major too.Im very immpres from ur streght and smile. |
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Sunday, November 23rd 2008 - 05:56:51 AM |
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Madhu Sachdeva [e] |
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If father is beta thalassemia minor & mother is normal, what are the chances of thalassemia for a child. |
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Thursday, October 23rd 2008 - 01:53:30 AM |
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Ryan [e] [h] |
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Great job with all the new things added to the website. It is a pleasure to visit it. Happy day to All. You may want to support my sites valtrex prices ... tramadol dog ... too. |
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Saturday, September 27th 2008 - 12:24:09 PM |
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Aaron [e] |
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My brother and his wife have Thal Minor, they got pregnant and tested their unborn baby for Thal Major, it turns up that the baby had Thal Major. At 20 weeks they decided to abort, it was heartbreaking. All the doctors recommended aborting, saying this child will live a hard and painful life. I tried and tried to talk them out of it but they went through it anyway. Is this common to abort an unborn baby who has this condition when the parents are aware of it? I'm confused and heartbroken. Please shed some light. Thanks. |
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Wednesday, July 23rd 2008 - 10:52:39 AM |
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Tuesday, July 15th 2008 - 06:18:46 AM |
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Joseph "Tha Brick Wall" Lothan [e] [h] |
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I've heard that ya'll niggz have been frontin' on my turf. F off fools. this is my hood. word. |
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Thursday, February 28th 2008 - 10:30:36 AM |
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Daniel Finger [e] [h] |
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I WOULD LIEK TO APOLOGIZE |
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Tuesday, February 26th 2008 - 10:11:44 AM |
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CJ [e] |
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Thank you for your website. Diagnosed with Beta Thal in '97 and my son was diagnosed last August. My father has it and his father had it and my brother has it. Does this gene ever give up? My grandparents on Mom's side were from Norway and my Dad's mother from Norway. My Grandfather on Dad's side was obviously the carrier? He had olive complexion/green eyes.
My son and I are so pale!(and tired)...I can relate to many physical/emotional symptoms researched. I'm praying for Thal majors out there too; makes my problems seem so trivial... |
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Monday, January 14th 2008 - 01:45:32 PM |
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mini [e] |
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this site is very nice, give me more information
thanks, |
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Monday, December 3rd 2007 - 02:57:42 AM |
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sabera sangani [e] |
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I've recently discovered my third child who is only 1 yr old has got thalassemia major. really concerned how get about managing it, even if possible go for bone marrow tansplant.
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Saturday, September 8th 2007 - 01:14:32 AM |
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EDITH PARTEE [e] |
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Hi everyone!!! I am glad I found this site. I am 36 years old. Just diagnosed with this disorder in May of last year. I am actually worried about this. After many unexplained episodes of extreme weight loss, the worse stomach pains ever, vomiting & jaundice, joint & muscle pains I had no idea of this never heard of it for that matter. Would like to get to know other people find about their experiences and what can I do. Please email me @ sixfoot_lunatic@yahoo.com. Thanks and hope to hear from ya soon. |
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Tuesday, August 14th 2007 - 03:02:05 PM |
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aurora |
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hi everyone!!i'm french from corsica and i have beta thalassemia since i was born we discovered it when i was 4 because i was so tired i wouldn't wanna walk...
now i'm almost 17 and tired of being tired too!!(laugh)
it's good because you guys in america talk about it because in france it's not really the case..
anyway i wish you a good day and i hope they'll find a better treatment as soon as possible!!and that it'll be exported to europe...
xoxoxowith comprehension and hope
aurora |
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Tuesday, May 22nd 2007 - 08:49:11 AM |
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Claire Ramlogan-Salanga [e] [h] |
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I just wanted to say that your site is great. I have thalassemia minor and have decided to complete a project in school to inform (biology) students of this genetic disorder. Your site has helped me understand what people with Thal Major "really" go through.
Thank you. |
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Wednesday, May 16th 2007 - 06:27:25 PM |
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Dano [e] [h] |
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I found this website extremely helpful and I'm glad that it is up. Thank you for all the information and I sincerely hope for a cure to be found for this terrible disease. |
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Wednesday, May 9th 2007 - 11:23:55 PM |
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paige bowden [e] |
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im sorry to hear about everyone that has had this and i pray each night that someone will find a cure but ill keep yall all in my prayers! |
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Tuesday, May 1st 2007 - 11:46:28 AM |
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mohamed bassam [e] |
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HI my name is Mohamed Bassam. I am from maldives. I am having beta thalasemia since i was born.In our little country we have more than 500 people who are thalasemia majors.And more than 70%people are carriers.
my mail add is mohamedbassam@hotmail.com
may god bless u |
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Friday, April 20th 2007 - 11:06:14 AM |
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Wendy [h] |
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Thank you for having such an informative site! I wanted to learn a little more about thalassemia as I had come across it in my research. I am trying to raise awareness of the potentially fatal but easily preventable haemochromatosis or hemochromatosis as some spell it as some very close family members suffer from this condition. |
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Saturday, April 14th 2007 - 09:40:52 PM |
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NITAL [e] |
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Your site was very interesting. I am doing seminar on thalassemia & i got lot many infomation from your site. Thank you. |
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Sunday, February 11th 2007 - 04:44:46 AM |
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naznin [e] |
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i was very impressed by this website. i hav beta-thal-major and am now at risk of heart disease cuz of iron overload. i was doing some research and would lik to learn about any possible diet's related to my case to improve my helath. if u know anythin and want to share please write to me at patel_naznin@yahoo.com |
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Friday, February 9th 2007 - 05:20:30 PM |
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Rahul Mehta [e] |
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I was totally in the dark about this word Thelasemiac until last night , when i got a call from one of my long time girlfriend informing me about her sufferings, till then i am just collecting the informations and this web page is the best i have surfed till now. I want to know more and also how to prevent it along with saving my friend from entering into depression. i love her and shocked to understand her problem. |
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Wednesday, January 17th 2007 - 02:28:45 AM |
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Marilyn Fantauzzo [e] |
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Hi Shirley,
We met at the Saints & Sinners clambake a few weeks ago & just now had a chance to visit your website. I have to tell you I think your Lisa was a very brave young woman who lived her short life to the fullest. I also think it's wonderful that you're continuing to do what you do in her memory. God Bless.
Marilyn |
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Tuesday, September 5th 2006 - 08:43:42 PM |
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Rosanna Vitale-Upton [e] [h] |
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Hello
My name is Rosanna and I have had beta Thal Major since 1962 when I was only 8 months old. I had my spleen out at age 14yrs
deep Muscle injections of 4mils dailey til I was about 21yrs then I went sub, now I'm 44yrs old and find it very hard to do them anymore, and now my iron is creeping up.
So I'm hoping to try some new tablets on the market called ferriprox. A few years ago I went on the L1 for a year but I found it made me very tired, so I came off them, and going back to Desferal was very hard.
I have had lots of bad times in the old old days when needles were very painful, days before these combfy little hollow plastic needles.
There's been massive changes made though all these years, now all I wish is to be on time in life for Gene therapy...
I am a singer/songwriter and it's that which makes me want to go on.
Check out our web page www.nocomment-2006.co.uk
web page has a link for you to listen to us contact me also
Love and strength all you thals god bless you's |
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Sunday, August 20th 2006 - 09:10:46 PM |
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Toni [e] |
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Hi! My name is Toni and I have to say great info. I've been doing some research about Thalassemia because my mother and Father had it. I never realized there were many types of Thalassemia, and I find it interesting research. Thanks for sharing info. with me to figure out my strategy of how to try to maintain a healthy life style. Hope all is well with all of you.
Best,
Toni |
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Wednesday, August 9th 2006 - 04:07:34 PM |
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lanierose t. vilan-zosa [e] [h] |
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my son is 3 years old and just recently a doctors finding that my son is a thalassemia, he alredy undergo bonemarrow before it was diagnose that he is a thalassemia, I want to gather more info to enlighten me and to some medications and remedy for my son, he is my one and only child since im already 40 yrs. old and am afraid to have another child |
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Tuesday, August 8th 2006 - 04:34:31 AM |
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lanierose t. vilan-zosa [e] [h] |
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my son is 3 years old and just recently a doctors finding that my son is a thalassemia, he alredy undergo bonemarrow before it was diagnose that he is a thalassemia, I want to gather more info to enlighten me and to some medications and remedy for my son, he is my one and only child since im already 40 yrs. old and am afraid to have another child |
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Tuesday, August 8th 2006 - 04:28:42 AM |
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bildrix [e] |
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HI!
I've been a HEP-C patient for @ 20 mopnths total. I'm extremely fortunate to have recently been informed by my Doctor that due to my "super response" to the treatment, I no longer am to take it!!! !!!
The bummer I have is that I just got delivered my MONTHLY treatment package that contains:
RIBAVIRIN 200MG. CAPSULE 180 ea. 3 caps 2Xs A DAY
PEGASYS sterile pfs monthly kit 180MCG/.5ML (4 dosed syringes in sealed box).
PROCRIT 40000U/1ML VIAL in a sealed box of 4 vials.
While I try to figure out what to do with this while it sits in my refrigerator, does anyone have an idea...PLEASE???
Thanx&Happiness!
bildrix@yahoo.com |
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Sunday, July 16th 2006 - 04:40:20 PM |
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Gabriel [e] [h] |
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Long searched old porn gay |
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Wednesday, July 5th 2006 - 02:06:49 AM |
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Nora [e] |
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hi
am 26 years old, am a teacher i had my first blood transfustion when i was two months old,, i am really happy to be able to help anyone,,,
i wanted to know if anyone here is from Iran, cus i've heard that there is a cure just with using injections for three months and tablets for a year and half, my friend already took an appointment for her daughter on 22 of july,, and i know a patient in the same medical center i am going to for blood transfusion and he has not had a blood transfusion since he had that treatment for nine months..
i really wish if anyone knows about that treatment to be in touch with me,,,
and from my behalf i will inform you all about it when i know anything new,,,
be safe,,
Nora |
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Saturday, June 24th 2006 - 05:43:19 AM |
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Jackson Reed [e] [h] |
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You have a very good webpage here, so best greetings to you and all your visitors. Admin of http://medalin.web.fc2.com/clonazepam/ |
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Wednesday, June 7th 2006 - 11:16:59 AM |
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Jessica Gustason [e] |
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My 4 year old daughter was recently diagnosed with Thalassemia. She had been chronically ill since January 2005 with recurrent kidney infections. Recently the Dr.s discovered that she had gallstones and needed to have her gallbladder removed and that is when they discovered that she had thalasemmia. I had never heard of it until recently and no one I know has ever been sick with this. It's been rough going and we were beginning to fell crazy trying to find someone else with the disease. My daughter is currently being treated at Strong Memorial as well. I read your story and it gives me great hope for my little girl. Thank you so much. |
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Monday, June 5th 2006 - 03:26:30 PM |
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Benjamin Woffindale [e] |
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I am now starting 3 months of Exjade, & have had no side effects. I am well overall, compliancy has not had any problems what so ever! All is well with my Mom and her Husband. My sister is well, I am an uncle, my brother is in the Army. Two of my closest cousins are succesful in there skills of trade. MY father is well and surviving in Orlando, so after not knowing him for a long time we are rebuilding our father/son relationship. WEll friends and family who see this feel free to email me. Out of respect if I don't know no emails please? Hope to hear from the Cammileri family soon, share this with the sisters and cousins and nieces that I know in the family. From, your good friend Benjamin Woffindale |
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Friday, June 2nd 2006 - 06:04:47 AM |
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mahesh [e] |
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hi !!
the best web site i ever came across !!
i am thalassemia intermedia, and recently i was transfused ( given 2 units of blood )its the second time i was transfused ( first transfusion took place 26 years back ).
i am 35 yrs old happily married with 2 sons ( thank god they are not suffering from thalassemia!! )doctors have given me this mantra to live " EAT , ENJOY AND BE MERRY " so readers all of you also do the same .( its all in the mind ) |
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Friday, May 12th 2006 - 11:42:13 PM |
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manjeet singh [e] |
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Wednesday, April 19th 2006 - 04:28:30 PM |
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ALISHA ALBURY [e] |
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HELLO I NEVER KNEW I HAD ALPHA THALASSEMIA UNTIL 3WKS AGO SO I HAVE BEEN LOOKING FOR A LOT OF INFO ON THIS BUT I ALSO HAVE IRON DEF. ALONG WITH IT AND WAS TOLD THAT WAS RARE MY MOM OR DAD HAVE ANY THING SUCH AS THIS I WAS ALWAYS WONDERING WHY ME? BUT NOW I JUST THANK GOD FOR WHATEVER HE HAS FOR ME AND DEAL WITH IT. I HAVE BEEN GETTING TRANSFUSSION SINCE BIRTH BUT NOW IT'S LIKE EVEY 5-6WKS I NEED ONE BUT I CAN'T CONT. LIKE THIS IS THERE ANY OTHER THINGS I CAN TRY? PLEASE TELL ME SOMETHING BE INFEED AND TRANSFUSSIONS? I AM LOOKING FOR OTHER THINGS TO TRY THESE TO ARE NO LONGER WORKING. |
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Monday, March 20th 2006 - 12:47:18 PM |
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Siva [e] |
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hi there.
was searching some info on Thalassemia and i bump into your website.How are you today? oh, btw, im a final year medical student and im doing a project on Thalassemia. i have a 8 yr old boy with Beta Thal major who was under my care for the past 2 yrs.he is doing fine.
you take care ya. |
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Friday, March 17th 2006 - 11:49:15 PM |
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Ellen [e] |
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Hi, my granddaughter has been diagnosed with Beta, not sure yet if it is major or minor. My husband has minor. We are praying that Julianna's will also be minor. She is 8 months old & very tiny for her age. They were looking for answers when this was discovered. We are praying for the best. Thanks for your website, there are not enough like yours. Ellen Langston, Texas |
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Friday, February 10th 2006 - 05:49:58 PM |
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Krystyle Hayes [e] |
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I think this is a great website. I needed information fro a school project. It gave me all the information I needed. Thanks for making such a great website. |
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Thursday, January 5th 2006 - 12:18:56 PM |
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April [e] |
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I know how its like to have a disease all ur life. Ive just learned about this one. I think we should live each day like it was our last, and never to forget to show the people that we care about that we love them |
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Saturday, December 3rd 2005 - 05:13:22 PM |
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Brandi [e] |
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I was diagnois with alpha thalassemia trait about a year ago. I feel great must of the time. Although, I have minor aches and pains from the anemia. |
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Friday, November 11th 2005 - 04:42:55 PM |
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Amir Mustaqim [e] [h] |
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Pls tell me about ICL 670 the new iron chelating drug. |
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Thursday, October 27th 2005 - 06:49:37 AM |
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elly [e] |
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hi, i'm elly from malaysia. my husband husband is suspected to suffer from thalessemia. Though it is not confirmed, i need to read up and prepare for the actual result which is going to be in 2 weeks from now. hope i can get good advice from friends who are having thalassemia. |
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Monday, October 10th 2005 - 10:19:15 PM |
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sapphire earrings [e] [h] |
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Monday, October 3rd 2005 - 08:20:27 AM |
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Andy [e] [h] |
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Please join us at the group Lisa created, at http://groups.msn.com/ThalassemiaPatientsandFriends
You will find many people to talk to about thalassemia. |
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Tuesday, September 27th 2005 - 08:34:41 PM |
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Annapoorna [e] |
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Hey everyone,
This is Anna. I am student from United World college. I am conducting a high school level research on Thalassemia. I need four case studies. I have already got two case studies from a doctor in India. But it has been very hard for me to get case studies from a developed country. I am comparing the level of stress and ways of coping stress and how economy of a country p[lays a role in getting treatments. So if there is anyone who is willing to provide me withthe case studies, that would be wonderful. To find out more about the confidentiality issues, and what exactly my research is and to send me ur case studies, feel free to email me at annapoorna_atluri@hotmail.com |
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Friday, September 9th 2005 - 10:04:47 PM |
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Rosalina [e] |
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Hi! I`m 17 years old and I suffered prom thalassemia major .I feel well , but I need some friends who have the same problem as me .. to give me some moral support because it's really difficult to me .. I've already written here but nobody replied me ... may be this time I'll receive some e-mails!Thanks! Success to all of us! |
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Sunday, September 4th 2005 - 10:43:00 AM |
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Benjamin Woffindale [e] |
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Hi Shirley & Angela;
It has been too long since I have written. I now have internet access at home. I was in Rochester this past July, I had to go back for my Grandfather's funeral, he was 81 yrs. old. Joseph Cotropia was a stong & great man, and I miss him. David I have not spoken to yet, his Mom says he is well. Now I am on my 6th In-Fus-A-Port. I also have fractured my heel also. But, that is it for injuries. I miss everyone in Rochester, both families and friends. I'll write again soon. |
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Saturday, September 3rd 2005 - 06:05:35 PM |
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Akriti Kharel [e] |
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I am 12 year old Thalassemia Major girl from Nepal. I have been receiving blood from the age of 6 months - my parents tell me. I need help.
Akriti |
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Tuesday, July 12th 2005 - 02:24:11 AM |
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chris foo [e] |
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i have been recently diagnosed with thalassemia with a history of my mother having it. All this while i didn't know my mother had it. I only knew at the age of 18 yrs that i had low blood count (anemia). I am happy and honored to sign in your guest book.
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Monday, July 11th 2005 - 10:55:28 AM |
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Carolyn Allen [e] |
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I was diagnosed with thalassemia in 1989, but was not told
what kind.So I assume it's not life threating. I do have spells of weakness, and I just start back on my Iron. |
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Monday, June 27th 2005 - 03:56:48 PM |
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Nicole Snyder [e] |
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My prayers go out to everyone-those whom are affected by the disease and their families. I am a single mother and will find out in two days if my newborn son has this disease. You never think about these things until it hits you in the face. I have been through alot in my life and I belive what hurts you makes you stronger, but this will be tough to deal with if he is positive. I hope everyone that reads this is well and my prayers are with you. God bless you all. |
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Saturday, June 25th 2005 - 04:18:22 PM |
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Narendra [e] |
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Hello,
Such sites are very useful for people like me who just hear of family members having Thalasseamia Major. My sister's daughter has it. She is only 6 months old and was treated with Blood Transfusion once.
I would like to hear what are the cure of this disease. I have read Gene Therapy as one and the Bone Marrow as another. What are your views?
-Narendra |
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Saturday, June 25th 2005 - 06:33:14 AM |
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Tom Elliot [e] |
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I have found your site very informing as i have the minor strain and till now didn't know much about it at all thank you....... |
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Saturday, June 25th 2005 - 01:23:45 AM |
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juanito [e] |
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Hi Guys/Gals,
Im from Australia great site,
I dont have thal but my partner does. Ive noticed that it seems like in the us u guys get transfusions every 4 weeks as oposed to us here which is every 3 weeks. I find that with my partner since she has been transfused every 3 weeks she seems to be more active and doesnt get as tiered leading up to transfusion. Also her hemogloben tends to remain steadier and closer to normal renge. She is on 3grams of des 5 nights a week and i was wondering if any of u r on the new tablet form and what ur experience with the tab has been. also her iorn leavels are within normal range not :-) (finaly) so we hope to be able to maintain that. Anny further info on the tablets would be great thankyou
Keep Well |
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Thursday, June 23rd 2005 - 11:00:00 PM |
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josefina rojas [e] |
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i'm a patient with this desorder, i've just got in this
wounderful information thanks. josie |
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Thursday, June 23rd 2005 - 02:29:28 PM |
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siti yats [e] |
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hi everyone, great site very useful. need to let off what i feel. i am terribly worried after reading everything there is abt thalassemia. I brought my son to the doctor who suspected that he may have it. he will be fourteen soon. the final blood test result ( 3rd one .this time for tha. stage 2) will be out next friday. i have 4 other children and i am really really worried. none in on my side of the family or my husband's has this disorder. could it be possible that we have been silent carrier? My son has been experiencing dizziness since end of may. it is just mild and he can still go abt his daily activities. is that dizziness one of the symptoms? |
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Thursday, June 9th 2005 - 09:33:15 PM |
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leah mcdaniel [e] |
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I am so glad that I ran across you. My daughter also has thalassemia. It is not major but she still suffers alot from it. When she gets sick she gets REALLY sick. I have almost lost her several times. My pregnancy was difficult because my body knew she had this disorder. I do not carry this trait but my ex-husband does. His mother died from it at the age of 55. The doctors really have no idea what it is and I have to educate them. I am just glad that there is someone else out there that has problems also. The one doctor that I have found that knows about thalassemia says although there are 2 main types alpha and beta that there are over a 100 different strains of it that have mutated over the years and my daughter got the "lucky" strain that makes her get real sick but does not require the blood transfusions all the time. Well, I have bored you now. God bless you and have a good day!!!
Leah, mother of a 6 year old daughter suffereing from thalassemia |
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Thursday, June 9th 2005 - 07:39:32 AM |
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SunShine [e] |
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hi everybody,
I hope you are all fine and shall Allah rest Lisa soul in heaven, she was really great I wish I can do for thalassemia half of what she did and I know I won¡¦t, cus she did a lot,
I had wrote on this forum before but that was two years ago,
Well I am in regular blood transfusion since I was two months old and I am now 24 years old. I am in my final year at college, doing Bachelor of Education; hopefully I will start working on sept,
as I said I went actually for bone morrow transplant but couldn¡¦t do cus of donors mismatch, but I don¡¦t want to stop here and I want to take thalassemia off my life and I am sure ¡§inchallah¡¨ that I will be able to. for that my bro and sis are going to redo the blood test hoping that there were a mistake last time but if that didn¡¦t work then I am going to do an international research, ƒº
Well, two years ago I had hepitis C, but I gone into Interferon medication and now the test is always negative,
The other good thing I like to share with others is that I am now on oral desferal medication, I take 8 and half tablets a day and desferal injection decreased to four times a week, ¡K
To end by I want to tell Lisa and my three passed cousins that I am proud of them , and they are my role module in my life,
I am writing here again to tell anyone not to hesitate to write to me if wanted to know anything about thalassemia or bone morrow transplant. though I don¡¦t mean I know everything about it, I just have the experience.
So ppl having thalassemia is not the end of the world, so keep smiling
Yours
Sunshine
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Monday, May 16th 2005 - 04:45:39 AM |
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SunShine [e] |
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hi everybody,
I hope you are all fine and shall Allah rest Lisa soul in heaven, she was really great I wish I can do for thalassemia half of what she did and I know I won¡¦t, cus she did a lot,
I had wrote on this forum before but that was two years ago,
Well I am in regular blood transfusion since I was two months old and I am now 24 years old. I am in my final year at college, doing Bachelor of Education; hopefully I will start working on sept,
as I said I went actually for bone morrow transplant but couldn¡¦t do cus of donors mismatch, but I don¡¦t want to stop here and I want to take thalassemia off my life and I am sure ¡§inchallah¡¨ that I will be able to. for that my bro and sis are going to redo the blood test hoping that there were a mistake last time but if that didn¡¦t work then I am going to do an international research, ƒº
Well, two years ago I had hepitis C, but I gone into Interferon medication and now the test is always negative,
The other good thing I like to share with others is that I am now on oral desferal medication, I take 8 and half tablets a day and desferal injection decreased to four times a week, ¡K
To end by I want to tell Lisa and my three passed cousins that I am proud of them , and they are my role module in my life,
I am writing here again to tell anyone not to hesitate to write to me if wanted to know anything about thalassemia or bone morrow transplant. though I don¡¦t mean I know everything about it, I just have the experience.
So ppl having thalassemia is not the end of the world, so keep smiling
Yours
Sunshine
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Sunday, May 15th 2005 - 11:57:57 PM |
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SunShine [e] |
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hi everybody,
I hope you are all fine and shall Allah rest Lisa soul in heaven, she was really great I wish I can do for thalassemia half of what she did and I know I won¡¦t, cus she did a lot,
I had wrote on this forum before but that was two years ago,
Well I am in regular blood transfusion since I was two months old and I am now 24 years old. I am in my final year at college, doing Bachelor of Education; hopefully I will start working on sept,
as I said I went actually for bone morrow transplant but couldn¡¦t do cus of donors mismatch, but I don¡¦t want to stop here and I want to take thalassemia off my life and I am sure ¡§inchallah¡¨ that I will be able to. for that my bro and sis are going to redo the blood test hoping that there were a mistake last time but if that didn¡¦t work then I am going to do an international research, ƒº
Well, two years ago I had hepitis C, but I gone into Interferon medication and now the test is always negative,
The other good thing I like to share with others is that I am now on oral desferal medication, I take 8 and half tablets a day and desferal injection decreased to four times a week, ¡K
To end by I want to tell Lisa and my three passed cousins that I am proud of them , and they are my role module in my life,
I am writing here again to tell anyone not to hesitate to write to me if wanted to know anything about thalassemia or bone morrow transplant. though I don¡¦t mean I know everything about it, I just have the experience.
So ppl having thalassemia is not the end of the world, so keep smiling
Yours
Sunshine
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Sunday, May 15th 2005 - 11:51:04 PM |
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SunShine [e] |
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hi everybody,
I hope you are all fine and shall Allah rest Lisa soul in heaven, she was really great I wish I can do for thalassemia half of what she did and I know I won¡¦t, cus she did a lot,
I had wrote on this forum before but that was two years ago,
Well I am in regular blood transfusion since I was two months old and I am now 24 years old girl. I am in my final year at college, doing Bachelor of Education; hopefully I will start working on sept,
as I said I went actually for bone morrow transplant but couldn¡¦t do cus of donors mismatch, but I don¡¦t want to stop here and I want to take thalassemia off my life and I am sure ¡§inchallah¡¨ that I will be able to. for that my bro and sis are going to redo the blood test hoping that there were a mistake last time but if that didn¡¦t work then I am going to do an international research, ƒº
Well, two years ago I had hepitis C, but I gone into Interferon medication and now the test is always negative,
The other good thing I like to share with others is that I am now on oral desferal medication, I take 8 and half tablets a day and desferal injection decreased to four times a week, ¡K
To end by I want to tell Lisa and my three passed cousins that I am proud of them , and they are my role module in my life,
I am writing here again to tell anyone not to hesitate to write to me if wanted to know anything about thalassemia or bone morrow transplant. though I don¡¦t mean I know everything about it, I just have the experience.
So ppl having thalassemia is not the end of the world, so keep smiling
Yours
Sunshine
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Sunday, May 15th 2005 - 04:35:45 AM |
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Priscilla Taylor [e] |
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I think this website is wounderful! I have minor thalassemia and my heart goes out to everyone suffering from Major thalessemia. Most people and doctores don't even know this disorder exists. I know what it feels like to be tired and anemic and I just want to incourage everyone who has has run into complications with this disorder to stay strong! God Bless! |
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Wednesday, April 27th 2005 - 02:10:04 PM |
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Sherley Charles [e] |
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Hello & God Bless,Right now I'm in the process of doing a health research proj. I was in a rush but I took my time & went through your whole website. I think that your website is a great way of informing peole about this disease. I just wanted to encourage you to keep up the good work. "His eye is on the sparrow & I know that he watches you" God Bless again! |
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Monday, April 25th 2005 - 01:52:31 PM |
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Sherley Charles [e] |
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Hello & God Bless,Right now I'm in the process of doing a health research proj. I was in a rush but I took my time & went through your whole website. I think that your website is a great way of informing peole about this disease. I just wanted to encourage you to keep up the good work. "His eye is on the sparrow & I know that he watches you" God Bless again! |
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Monday, April 25th 2005 - 01:52:20 PM |
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C SONETIROT [e] |
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Thank for the information. Now I know what it is. |
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Friday, April 22nd 2005 - 08:19:29 PM |
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brian griffin [e] |
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Lisa,
You will always be in my heart. I haven't seen you in a very long time, but you will always be in my prayers forever. |
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Monday, April 18th 2005 - 10:01:56 AM |
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brian griffin [e] |
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Lisa,
You will always be in my heart. I haven't seen you in a very long time, but you will always be in my prayers forever. |
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Monday, April 18th 2005 - 10:01:37 AM |
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Dominick M Morano [e] |
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My best freind growing up, his father appears to have died from this disease and I just found out recently. Please let me know who and where to send a donation.
Thank You
Dominick M Morano
150 South Indian Canyon Drive
Palm Springs, CA 92262 |
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Friday, April 15th 2005 - 05:13:04 PM |
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Megan McAlister [e] |
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I am doing a report on thalassemia major and this site really helped me!! |
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Thursday, April 14th 2005 - 01:21:56 PM |
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Andy [e] [h] |
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Hi. You definitely need some advice. Please join the support group Lisa created at http://groups.msn.com/ThalassemiaPatientsandFriends
We will try to get you whatever information you need. |
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Thursday, March 24th 2005 - 07:41:51 PM |
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ebrahim saib nusruth [e] |
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i am 22 years, i'm sufferinf from thalassemia major since i'm born. sorry i don't now english well as i am a mauritian girl. i'm doing alot of research on this illness but it seem in vain. here in mauritius we were about 10 suffering from this but now it remains only 3. i'm very scared as i don't want to dye now especially in hospitals. here the hospitals are very bad. they don't encourage us, they are lazy. i've learn that there are desferal pills in uk i told this to my doctor he told me to get the literacy of this medcine which i badly need. pls help me to get this. thanks |
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Wednesday, March 23rd 2005 - 12:20:14 AM |
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henry [e] [h] |
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RIP
REST IN PEACE!!!
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Friday, March 18th 2005 - 09:01:07 AM |
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henry [e] [h] |
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RIP
REST IN PEACE!!!
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Friday, March 18th 2005 - 09:01:01 AM |
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Michael VanAs [e] |
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My Dearest Lisa,
I am so sorry that I have been out of your life for so long. I will always wonder......what if......what if I did kiss you? You were my first and only true love, but I did not have the courage to really show you how much you meant to me. You will live in my heart forever and always. I still carry your 4th grade picture as I kept it on a cloud of cotton under protective glass as to not let it fade. I was crushed to find out about your passing. I think of you all the time and believe that you have reached out and touched me and brought me to your page here. There is so much I wanted to say to you, share with you, you have touched my life forever in many ways. I can still see your beautiful smile, and always think of you when I write the letter "C" which you taught me how to write the Cammilleri way. :o) I miss you so much and wish that things could have been different between us. I will cherish you forever and ever. You have touched the lives and hearts of so many people and they're right, you are the most special person I have ever known, and always knew that everybody would just love you as I do. Rest in peace my dearest Lisa, I will see you again one day, and when I do.... I owe you that special kiss. :o)
Love Always, Mike VanAs
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Tuesday, March 8th 2005 - 09:26:50 PM |
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Asaba Owerri [e] [h] |
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I love this page. It looks really nice. Keep it up |
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Tuesday, March 8th 2005 - 04:32:46 AM |
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Andy [e] |
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Yes, Lisa, your site does live on, just as you left it. Just as you trusted me to keep it alive. YOUR site still is there where it's been at http://groups.msn.com/ThalassemiaPatientsandFriends
It has not moved.
You would be thrilled to know that we are about to reach our 400th member registration. Every day when I visited you in the hospital, you asked how many members do we have now. Well, Lisa, today it's 399. I know you're smiling down from above. We do the best we can to keep your legacy alive. Yours was the first and is the only original thal patients site. It has NOT moved elsewhere as some poser tries to imply on this guestbook and in emails to thal organizations all over the world. No, that it is not Lisa's site in spite of what may be said. Lisa's site is where it's been and will stay on MSN. It's a shame that ego and ambition can lead to such behavior, but that is what has happened. It's somewhat ironic that the guestbook on this site which is run by Lisa's mom would be used by the same person who told me that Lisa's mom should walk away from thals and have nothing more to do with thal. Yes, the same person that told me I'm not a thal and that I don't care about thals. Well, non-thals can care about thals and Lisa knew that more than anyone. She greatly appreciated my efforts and called me her biggest supporter. And as hard as it's been without Lisa here with us, Lisa's mom has carried on raising money for the Cooley's anemia organization. Shirley has done so much for thals over the years and deserves a huge thanks from everyone. I greatly appreciate her recent input on the message board at thal patients and friends. She is the voice of experience and has been dealing with thals most of her life and I am happy that she shares that experience with us.
Yes, Lisa, your dreams, hopes and wishes do live on at your own site. http://groups.msn.com/ThalassemiaPatientsandFriends/
You trusted me to carry on and I do that for you and for all the thals. Every time I look at the little Best Friends bear you gave me for my birthday one year ago on January 19, I know that the only right thing is for me to carry on your legacy. That bear is my dearest belonging. To know the pain that you were in when you walked to my store that day from your car on legs that could barely hold you up, and to know that you did it because you loved me as a brother means more to me than anything in this world. I love ya little sis and I always will.
Andy
ps.....I'd like to thank Lisa and her mom, Shirley for purchasing the recliner chairs in the cancer center at Strong Hospital. Both blood disorder patients and cancer patients use these beautiful chairs and I have a special thanks from my wife, Pat, who just finished her own course of chemotherapy in those same chairs. She felt Lisa watching over her every time she was there, and found great comfort in that. |
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Monday, January 31st 2005 - 04:48:08 PM |
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texas holdem rules [e] [h] |
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Please check out some information in the field of insurance quotes
... Thanks!!! |
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Friday, January 21st 2005 - 07:28:50 PM |
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Vikram Bhatija [e] [h] |
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Hi Lisa,
I have come back again on your site after nearly 2 years. I remember the evening when you spoke and asked me to moderate your MSN forum, a thalassemia forum that you have been running for last few yrs with lot of success.
You gave be another oppurtunity to help the thal cause...and this time to touch the lives on not just canadian thals.. but thals from across the WORLD.
I have come to tell you that your dream and your objective has encouraged me to take the forum a step further from where you started. I would like you to know that TODAY your dreams, hope and wishes still live with us on www.thalforum.com.
You are not with me physically and I cannot see you but you live a little in each of us....giving us encouragement to live another day, to spread the message of thalassemia awareness and to give our best to spread information and help ourselves and other life a better life.
"Happiness lies for those who cry, those who hurt, those who have searched, and those who have tried for only they can appreciate the importance of people who have touched their lives."
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Wednesday, January 19th 2005 - 09:20:10 PM |
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Yogi [e] |
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Hi, My name is Yogi and my brother was born with Thalassemia Major and is now 22. He has a happy life, fighting fit and still smiling. Just want to say that this is a great site, lots of useful information and touching stories. I hope the world becomes more aware of Thalassemia. My heart goes out to you all. |
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Wednesday, January 12th 2005 - 05:46:08 AM |
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Vangelis Makridakis [e] [h] |
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What can I say...
Randomly found this website from the "The Best Designs" website homepage.I was there to submit my websites and saw this one. Lisa, if you can read this from up there in Heaven, be proud, you hear me? You made alot of people speak and research about their desease. I don't have any desease but I know how sad is a loss of a loved person. Our bodies, may die, our souls, never. We are flying memories from good things and moments of good people that we remember all our lifetime, as souls.
I don't know what to say and how to express it right in English, cause I'm Greek, and here in Greece we express our feelings with face to face discussions and body language. I just stopped by to tell you, all that involved running this website, be strong from any friend's loss or family member, think positive cause we don't expire after our body stop operating, we're infinite as God made us be.
All my best wishes to you here in the website, to all patients, to all doctors, to all parents, to all families, for a better research and maybe a resolution from biomedicine in the future. Be well, be strong and I'm sure, we all someday will meet somewhere out of here to share feelings and ideas/ideals more healthy and with God's company.
Take care all, and wishes for the holy days that coming and the new year from the botom of my heart for a better "tomorrow".
Best regards with honnor and faith,
Vangelis Makridakis. |
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Thursday, December 16th 2004 - 03:29:11 AM |
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Maria H. [e] |
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Hello, Wow..I feel blessed to have found your website. My Mom has Thalassemia intermediate and has the hardest time with this disease (Is Im sure you can imagine) She is 51 years old and she is the light of my life and my families. I was wondering if you could please email me the name of some hospitals or doctors that you know specialize in this. It seems that the doctors that we have, are not helping her whith several side-effects she has been expierncing lately. We reside in California, but we are willing to travel anywhere to get more help. Lately, she has been experincing terrible leg cramps, and I am wondering if that is something caused by the Thalassemia. She goes through crisis a couple times a year and has had many transfusions. Anyways, Anything you can provide would be appreciated. Thank You, and May the Dear Lord Bless You Always. Maria |
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Thursday, December 9th 2004 - 04:40:04 PM |
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verbal |
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God Bless you Lisa. You will be greatly missed. :*(
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Wednesday, December 8th 2004 - 12:05:07 PM |
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rica |
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Hi, i from malaysia. i'm also a thalassemia patien.i'm 13 years old. i have done my spleentomy operation when i'm 12.
i have learn so much at this site.
God Bless U! |
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Sunday, December 5th 2004 - 07:30:05 PM |
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marque Berry [e] |
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I am 16 years lod and I had to do a project on the disorder and my heart goes out for the people that have the disorder. |
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Sunday, December 5th 2004 - 11:52:06 AM |
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Blanche [e] |
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I consider myself lucky as I was one of the number of kids that was allowed to attend Camp Open Arms (Roch.,NY) a camp for childen and their siblings w/ such generic disorders. My brother has it. He has outlived many and will soon be in his thirties. Although the road has been hard for him I believe that is b/c of camps like that and the support of websites like this that people w/ cooley's can drive on.Thank you and God bless all of you. |
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Wednesday, December 1st 2004 - 08:53:31 AM |
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Krystal Lynn |
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Hi, my name is krystal Lynn and i am doing a research project on Thalassemia. Looking at the people who have to deal with this horrible diease makes me feel helpless. I would love to do any thing that i can even if it is a small part, but i would love to help out with support of families. I realize that this is an uncurable diease but these people who have it shouldnt die a bad life. it should be happy! |
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Tuesday, November 30th 2004 - 05:06:18 PM |
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Harper Pippens [e] |
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H.PIPPEN
I'M VERY HAPPY THAT I DISCOVERED WEB SITE TO-DAY.I JUST
TURNED 80 IN JUNE.IWAS DIAGNOSED AT THE VA CENTER 1 YEAR
AGO AS A THALASSEMIA PATIENT.I'V HAD A FEW TOTAL BLOOD
WORK TEST PERFORMED OVER THE YEARS AND WAS NEVER INFORMED
OF ANY BLOOD CONDITION.I MENTIONED THIS TO MY DAUGHTER AND
SHE INFORMED ME THAT SHE AND ALSO HER DAUGHTER BOTH HAS THE
SAME GENETIC DISORDER.TO DAY MY SON JUST INFORMED ME THAT
MY 10 MONTH OLD GRANDAUGHTER HAS BEEN DIAGNOSED WITH IT.
I TRULY FEEL DEVASTATED."MAY GOD PREVAIL FOR THEM |
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Thursday, November 18th 2004 - 08:06:11 PM |
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Harper Pippens [e] |
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H.PIPPEN
I'M VERY HAPPY THAT I DISCOVERED WEB SITE TO-DAY.I JUST
TURNED 80 IN JUNE.IWAS DIAGNOSED AT THE VA CENTER 1 YEAR
AGO AS A THALASSEMIA PATIENT.I'V HAD A FEW TOTAL BLOOD
WORK TEST PERFORMED OVER THE YEARS AND WAS NEVER INFORMED
OF ANY BLOOD CONDITION.I MENTIONED THIS TO MY DAUGHTER AND
SHE INFORMED ME THAT SHE AND ALSO HER DAUGHTER BOTH HAS THE
SAME GENETIC DISORDER.TO DAY MY SON JUST INFORMED ME THAT
MY 10 MONTH OLD GRANDAUGHTER HAS BEEN DIAGNOSED WITH IT.
I TRULY FEEL DEVASTATED."MAY GOD PREVAIL FOR THEM |
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Thursday, November 18th 2004 - 08:06:08 PM |
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Chee [e] |
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We didn't know what was wrong with our daughter. She was on the iron drops for her first 2 years. When I was pregnant with my son, we had a dna test done and had found out that my husband was a carrier. We finally know now that my daughter who is six years old now has thalassemia trait. My son who is four now doesn't have it. They are both healthy but I was very concerned about this when I knew nothing and very little. I still look up sites and read more about it. Doctors are still watching my children's iron levels. They are still unsure about other things. I just found this website today and will come back to read if there is any new info. Thanks for having it. Take care. |
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Tuesday, November 16th 2004 - 09:44:48 AM |
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Nikolay [e] |
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HI I am from Bulgaria and also have a Thalassemia minor. Please send me more information about this and tell me how can navigate my life in this conection.
I will be very hapy if everyone who want is writing me.
Thank you for this great page. |
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Tuesday, November 16th 2004 - 06:49:03 AM |
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Pat |
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Very touching website.
I pray for you all, keep strong and love one another unconditionally. Keep smiling :) |
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Thursday, November 11th 2004 - 03:13:51 PM |
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Kaly [e] |
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I was touched after reading Lisa's diary entries. Lisa I am sure you have lightened up other peoples lives as they are able to chat to others about Thalassemia and share their thoughts. I am currently learning about how Thal major can be inherited through couples with various thal minor traits |
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Saturday, November 6th 2004 - 02:55:24 AM |
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Mary Pascale [e] |
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I have mediterranean enemia and also have iron deficency. Do you know if there is an association that can help because I have no medical insurance and can't afford to get it on my wages. Please let me know. Thanks,
Mary |
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Friday, November 5th 2004 - 06:06:00 PM |
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Karate Devang [e] [h] |
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oh...hi...nice man |
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Tuesday, November 2nd 2004 - 03:52:29 AM |
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chelsea [e] |
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hello i am sorry to hear that you have this disease i am in highschool and learing about this disease your page help alot and you trually are a strong woman god bless you and you hold your head high up no matter what and dont let nothing or anbody come between your dreams |
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Monday, November 1st 2004 - 10:11:29 AM |
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Rachel |
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Hi,
I found this page while i was doing my paper on Thalassemia major. I learned a great deal from your website. Thank you! you are a strong woman! God Bless You! |
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Wednesday, October 27th 2004 - 04:32:08 PM |
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Scott |
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God bless your souls. My friend's daughter is four and has thalassemia, so I came here to learn more about it. I'm really scared for her. Her name is Savannah, please pray for her. Thank you for giving me more knowledge on this disease. SL
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Wednesday, October 20th 2004 - 11:56:26 AM |
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valdís Gunnarsdóttir [e] |
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God bless you all
Love you all
Be with you all. |
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Sunday, October 17th 2004 - 10:57:47 AM |
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guyman [e] |
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great site |
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Tuesday, September 14th 2004 - 08:45:16 AM |
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Joanna [e] |
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I'm sorry for the death of your daughter. My dad died when I was 11.I'm 15 now and I know how It feels to lose Someone you love dearly. God bless you |
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Saturday, September 4th 2004 - 06:30:30 PM |
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Vanessa [e] |
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the site is very informative.
i was touched by the "In memory of" page.
i also joined the msn group for thalassemia patients.
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Saturday, July 31st 2004 - 08:09:58 AM |
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stephanie dunn [e] [h] |
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dont know how i ended up here but i did... i bet it was one of those God things that just happen at random. well anyway i will pray for you to be healed and i know you will miraculously! love your work and your heart. thanks. you have inspired me in these few short moments |
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Monday, July 26th 2004 - 04:52:14 PM |
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weight loss product [e] [h] |
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Congratulations on finally setting up your site. I am sure the website will become a internet legend |
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Sunday, July 11th 2004 - 08:11:29 PM |
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SAJAL [e] |
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I am from Bangladesh / i need support |
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Thursday, July 1st 2004 - 12:23:01 AM |
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SAJAL [e] |
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I am from Bangladesh / i need support |
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Thursday, July 1st 2004 - 12:22:30 AM |
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Maria [e] |
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I THINK THAT WHAT YOU ARE DOING IS A GOOD IDEA BECUASE NOT MANY PEOPLE ARE AWARE OF THIS DISORDER. I WAS TALKING TO THIS ONE LADY WHO WORKS AT A HOSPITAL AND SHE WAS NOT EVEN AWARE OF THE EXISTENCE OF THIS DISORDER. WELL I AM DOING A RESEARCH PROJECT ON THALASSEMIA AND HOPEFULLY YOUR WEBSITE CAN HELP ME ALOT AND I HOPE THAT YOU MIGHT BE ABLE TO HELP ME IF A QUESTION MAY ARISE. I WOULD GREATLY APPRECIATE IT. THANKS!!!!! |
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Thursday, June 24th 2004 - 08:43:37 PM |
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xyberkidd [e] |
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Another sad song...another tribue...
another sister gone...another good youth...
we live in a world where we pay engineers and chemists millions to make weapons....weapons to kill each other...
we spend millions researching stuff that would only destroy us further...
when will we start dedicating our energies towards healing?
how many more? how many more?
help us find a cure God...'cause only you can.
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Sunday, June 20th 2004 - 09:04:33 AM |
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Ulli [e] [h] |
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I've found your website in the world wide web and I read this story at your friend Angela's Page. I'm so sad about what happened. I'm from Germany and had never the chance to know you. Let me pray some words for you:
in the arms of an angel
fly away from here
from this dark cold hotel room
and the endlessness that you fear
you are pulled from the wreckage
of your silent reverie
you're in the arms of the angel
may you find some comfort there |
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Saturday, June 12th 2004 - 04:52:38 AM |
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Patricia Marley [e] |
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I have just read your entire site. . God Bless You! I have suffered for 37 years now, and in Michigan there are no support groups that I know of :(. It has been a lonely road, so glad that it is finally becoming more public. My prayers go out to you and everyone on your site. Stay strong as we all must to survive. .
X X X
Patricia Marley
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Wednesday, June 9th 2004 - 04:51:55 PM |
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sign
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Thalassemia-Rochester Chapter
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