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| Name: | Eliza White |
| E-mail address: | missetw@gmail.com |
| Comments: | Hello All.
I'm a sophomore in high school in San Francisco and am doing a project on EB to raise public awareness. I have a cousin with EB and wanted to find out more about it. I need to interview 2 people impacted by EB for my project. If anyone close to SF would be open to this let me know. Just send me an e-mail. Thanks! |
| Name: | Cindy Cerone |
| E-mail address: | ccerone2@yahoo.com |
| Comments: | Hi,
I'm visiting this sight because I just attended a fund raiser for EB in memory of twin boys Zack and Kyle Ostrander. They were only two months old and died a week apart as a result of EB. Prior to this experience I have never even heard of it. Good luck in continuing to raise awareness and funds to end such suffering!1 |
| Name: | Randi Miller |
| E-mail address: | amarahsmommy@hotmail.com |
| Comments: | Hello, What a wonderfull site! I myself am a 21 year old w/ a mild case of eb. It has actually gotten better as I have gotten older. My 2 year old daughter also has begun showing signs of eb. Fortunatly for us were mild. My thoughts are love are sent out to all who have to face this yucky thing. And all children on this site, I admire you and only wish I has the courage to be as strong as you all are! Keep up the greatr work site master :)
Randi Miller California |
| Name: | conan trow |
| E-mail address: | kkcrt06@msn.com |
| Comments: | I am 5 years old and also have a genetic conditon.. I watched a special on tv. and wanted to learn more.. ,my mom is helping me online.. at first I was scared.. and then I was very sorry for the kids who have to have pain..
I will pray that there is a cure someday.. for my disease and yours.. |
| Name: | Lisa Crall |
| E-mail address: | hawthornecrall@yahoo.com |
| Homepage URL: | http://, |
| Comments: | Hi
Your EB site is just wonderful. My daughter Gabby has EB Simplex, Weber-Cockayne. Apparently, there is a medication from Germany available to help relieve (not cure) EB manifestations. Gabby was told about it at skin camp, and a fellow camper Megan Barron from Florida knows something about this. I am trying to find Megan to ask her. Gabby and Megan have gone to skin camp every year since they were little tykes and Megan is just such an inspiration to Gabby and myself, and really anybody who is just fortunate to gain her acquaintance. Thanks for your efforts in putting together a web site like this! Sincerely, Lisa Crall |
| Name: | Martha Moormann |
| E-mail address: | cmoormann1511@hotmail.com |
| Comments: | I have an adodpted granddaughter with EB (mild case) Just saw that Courtney Cox and David Arquette are raising funds for research on EB. Would like to contribute. Any suggestions? |
| Name: | MUGU |
| E-mail address: | MUGUDODAYHERE@YAHOO.COM |
| Comments: | I have seen how terribale EB is. My support goes out to the family and patients with EB. I am praying for the doctors to find a medicine that can help this kids. |
| Name: | callum ...aged 14 |
| E-mail address: | height_challenged@hotmail.co.uk |
| Comments: | hi, i had webbed fingers on both hand but i dont think it has much to do with EB.
i heard that people like me with webbed hands lived near the sea, and it just so how happens tht i was born in brighton and that is on the south coast. do you know any other queries! love too know. And i hope they do find a cure. callum. |
| Name: | ilker biyik |
| E-mail address: | munzevi76@hotmail.com |
| Homepage URL: | http://epidermolysisbullosa.blogcu.com/ |
| Comments: | hello everyone. my name is ilker. I was born in 1976. I am male and I live in Turkiye. I have EB distrofic. I want to correspond with others. |
| Name: | karren |
| Comments: | Hello,
I have seen how terribale EB is. My support goes out to the family and patients with EB. I am praying for the doctors to find a medicine that can help this kids. |
| Name: | karren |
| Comments: | Hello,
I have seen how terribale EB is. My support goes out to the family and patients with EB. I am praying for the doctors to find a medicine that can help this kids. |
| Name: | S Ali Naqi Jafri |
| E-mail address: | alinaqijafri@yahoo.com |
| Comments: | Dear All!
the webpage is great and too helpful, today i visited my niece 2 months old suffering from EB, she aslo have a 2 year old brother fine and ok, but my sister's eldest daughter was died due to same EB problem. Now the little one is having same. we live in Pakistan, with limited resources and people here have no knowledge and even no facilities avaible here to cure the young one. Some friends and doctors advised to use Non Stick PAD but here in Pakistan these are not available, so some how we managed to get a pack from USA (Curad NON STICK PADS). these are very effective. Is any one there who can help us and some packs of these PADS, Kindly contact. i m ready to pay the amount for the expenses. Thanks and waiting for any humble reply Ali Naqi- Sadat Colony, Near Masjid All-e-Muhammad, Bosan Road,Multan-Punjab-Pakistan 60000 +92-333-4753228 (Cell) +92-61-4541955 (Office) +92-61-6751463 (Home) |
| Name: | emma :) |
| Comments: | I feel very very sorry for you guys and hope you find a cure some day. But until then chin up, grit your teeth, and do your best.:)I give the butterfly children & parents good luck;) |
| Name: | emma :) |
| Comments: | I feel very very sorry for you guys and hope you find a cure some day. But until then chin up, grit your teeth, and do your best.:)I give the butterfly children & parents good luck;) |
| Name: | Hazel |
| E-mail address: | Hazelfog@hotmail.com |
| Comments: | Hey!!!
my cousin has this disease. she has a very hard life but i have recognised that dhe is one of the most strongest people i know. anyone out there with this disease just dont forget that you have a life to live and that you are normal. nobody will ever hurt you.... i support you all the way lotz of love xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx |
| Name: | Debbie |
| E-mail address: | dkt1929@comcaast.net |
| Comments: | My granddaughter Jaslyn was born with EB on April 27, 1999. She was with us for 9 wonderful months. I think of her often and often check the "web" for what is new. My heart goes out to the parents and grandparents. |
| Name: | Cynthia |
| E-mail address: | cibarra@nwinfo.net |
| Comments: | Hi, I have a grandson who is 4 years old he has EB. He does not have it as bad as some cases I have seen. But still it is bad enough. I have seen him cry out because he is in pain when a sore breaks open or he hits his foot or arm and a blister opens and begins to bleed. I think the worst part is now that he is getting older and beginning to go to school he notices the difference of other children and himself. I hope that people will look at him as a young boy excited to learn and meet new friends and not his EB. |
| Name: | angie 10 years old |
| E-mail address: | angiedamonkey@aol.com |
| Comments: | hi my names angie i go to p.s.95 and i feel so bad about whats happend to kids around the world.i think all sould treat kids with eb the same .but some people in this world do not like thier kids to be near kids with eb.but tell you kids and others stand strong and be who they are.i give the best of luck to you and family and people all around the world.=D love angie the 10 year old |
| Name: | Liz Payton |
| E-mail address: | rpayton002@cinci.rr.com |
| Comments: | My daughter was born with DDEB on 4/19/07. She is the 4th generation in her daddys family. Her daddy,grandma and great grandma all have this same form. This is a mild form and I am greatful,but my prayers go out to those who have any form of this disease at all and any one who takes care of them. She is my 3rd child my only daughter,the only one affected. My husband has learned to adjust with living with this and I know my little Emma will too. We are fortunate enough to live in the Cincinnati area and have an EB clinic close to us. The staff there is wonderful and very supportive,they cared for her while I remained in another hospital. We are ever so greatful for thier support and care,medicines have changed since my husband was born 27yrs ago and we are not giving up hope that they will find a cure. |
| Name: | bert |
| Comments: | i believe that the people with this disease should be treated equal to any normal person.when you meet them its okay to feel sorry for them but don't base that on getting to know that person. these people want to live a normal life too the best they can and the best way to do that is treat them as you would treat anybody else, with respect. |
| Name: | bert |
| Comments: | i believe that the people with this disease should be treated equal to any normal person.when you meet them its okay to feel sorry for them but don't base that on getting to know that person. these people want to live a normal life too the best they can and the best way to do that is treat them as you would treat anybody else, with respect. |
| Name: | Rebecca Cline |
| E-mail address: | rebeccacline222@yahoo.com |
| Comments: | Hey, my name is rebecca and i am sadly for what has happened to you and If I had a couple of wishes...I would definitly take away what the pain and all the the bad things that that is upon the body away from you and I would ask God to heal you....I then will take your place so that you would be able to spend your life happy!! Now evernight before I go to bed I will pray for you and hopefully one day my wish will come true just for you! I hope you do better, so that you can play and have fun like the rest of the kids...and also have a normal life insede of going through all of this...you don't deserve any of this because not only your just a kid but you also one of gods beautiful angels!! I hope and pray that one of these days that my wish comes true for me and you.
Rebecca L. Cline Age 16 |
| Name: | Rachelle Geilen |
| E-mail address: | bellasgirl17@hotmail.com |
| Comments: | Hello Everyone,
Ok, just a tad bit of info about me: I don't have EB, but I do have a skin disorder. I have Ichthyosis EHK, and many of my symptoms are very similar to EB, especially when I was a baby. Right now, I am taking Human Anatomy and Physiology, and we have been assigned this project to choose any skin disorder that we know of, and make a presentation about it. I must say, I have learned a lot about this website, and I really want to thak you for helping me broaden my knowledge about skin disorders, and for helping me make the people in my school understand what it is like to be different. Thanks again! Luv Always, ~Rachelle~ |
| Name: | stephanie holwell |
| E-mail address: | stephanieholwell23@hotmail.com |
| Comments: | I have been trying to find some recent information my EBS. i have lived with the disease for the last 25 years and although lately i have been pretty good, I have had really bad days too. This site will definately help those who know someone with EB and to better understand what we go through. |
| Name: | Meredith |
| E-mail address: | mcooke5@goivytech.net |
| Comments: | I am engaged to a man who suffers from EBS. Living with someone who has the condition is definately a learning experience, people with healthy skin take for granted all of the things that we are able to do without a second thought. Luckily (I'm not sure how..) my fiance's skin is slightly toughened because he went through several years of chemotherapy as a child to treat his leukemia. He is the third generation (that I know of) to inherit the disease in his family. Unless a cure or gene therapy is found before we are ready to have children our children will more than likely also have the disease. Pray for a cure everyone, I see his pain and I don't want my children to struggle with it also. |
| Name: | Laurin |
| E-mail address: | laurin04@bellsouth.net |
| Comments: | I am so grateful your organization exists. I knew of a little boy with EB who lived at a Florida hospital his entire life. They called him "The Crisco Kid." Thank God the staff loved him, for his short visit on this earth. A question: I have heard of medicinal clay helping people with MRSA. Is this an option with EB?
Blessing to all, Laurin |
| Name: | Linda |
| E-mail address: | lindaleekoh@yahoo.com |
| Comments: | I am a nursing student and wanted to learn more about EB. I am touched by your story and wish the best for you and your family. I just wanted to thank you and your son for sharing your touching story with us. |
| Name: | Sondra Atkins |
| E-mail address: | sdagemini@yahoo.com |
| Comments: | I am a 34 year old mother with JEB. We all have to have hope and true faith that this disease will be cured. But until then we must understand that these devastating challenges can be used for some very enlightening perspectives and lessons on life. All of us touched with EB have learned a great deal about compassion, patience and strength! These are blessing not to be overlooked. I feel that optimism has been one driving force in my life. My case is fairly severe and miraculously enough my 13 year old daughter does not have EB. I am so greatful for this website to teach others what our disorder is all about and what we deal with. My motto in life is, "I have EB but it doesn't have me"! |
| Name: | Eleanor |
| E-mail address: | ehemphill@comcast.net |
| Comments: | I just want to thank you for sharing your life with your precious son with us. I am a 4th grade teacher in New Jersey with a child with EB in my class. I was looking for information about his disease and found your webpage. I am going to save your webpage to share with him. He is one of my special children and although the other students don't quite understand what he goes through, he makes friends easily and they love him. They are also very protective of him and I love them for it. I will forever keep you and Nicky in my prayers as well as pray for a cure of everyone that suffers from this. God Bless you and keep you.
Eleanor |
| Name: | miriam quinlan |
| E-mail address: | miriam@yazoo.cu |
| Comments: | i had a beautiful baby girl born on the 19th of july 2004. her name was katie and she was born with severe junctinal eb. sadly she passed away on 14th august 2004 aged 8 weeks. the only comfort i take from this is that she died peacefully and is free of pain. i have 2 gorgeous boys aged 4 and 1 whom are eb free. we have all learned alot about eb, and i pray every day with all my heart that a cure is found so that no other child has to go through this horrendous pain. |
| Name: | Vardit Vaitzman |
| E-mail address: | chaimvai@netvision.net.il |
| Comments: | Please accept my prayers for a deep and fruitful research about EB. May a cure be found soon. With all the speedy developement in medicine today - there might be progress coming from other researches. Today - medical scientists are looking for what is common between different diseases - and how could a procedure that cures or improve one codition - can help other conditions as well. The hope lies in a new METHOD of help - may be something to do with gene- therapy. Or any of the new methods being developed. I don't know anything about other skin diseases - but i hope whatever htey learn about the skin in the other skin researces - will bring forward a new understanding and perhaps a breakthrough . Very gentle hugs to all in need - Vardit |
| Name: | Lewis Motter |
| E-mail address: | motterl@bellsouth.net |
| Comments: | Thank you for your wonderful sharing. It makes me realize how blessed I am. Although I have EB. I only have a mild form. I have dealt with it all my life and I am now 56 years of age. It just became a part of my life and I lived with it. I never knew how bad it could be untill now and what it was like for other people who dealt with this disorder. Thank you again. God bless you. |
| Name: | megan |
| E-mail address: | soccer967girl@yaho |
| Comments: | hannah this ones for u i know u struggeled but keep on going |
| Name: | Ian Boys |
| Comments: | You wesite has touched me..... being an RDEB patient.... it means a lot to me.
At 14, I've been blessed with my skin greatly improving.... and I pray for all those who are less fortunate.... I feel bad that I don't suffer as much as others.... yet I feel worse that they have to suffer as much as they do. You're all in my prayers. And thank you. |
| Name: | jessica marshall |
| E-mail address: | jess_cakes@hotmail.co.uk |
| Comments: | i couldnt think what you must be going though i have eb my self but mine is simplex i have just got married 4 weeks a go butwhen i was little no 1 would understand why i was waring bangages all the time and why my mum had 2 come and change them all the time life with eb hasnt been easy its getting a bit beeter now i have meet my husband and he is the most understandind person i cant thank my mum and dad enougth with everthink they went though |
| Name: | Jennifer Scott |
| Comments: | Hi, my name is Ms. Scott and I am honored to be Nicky's Counselor at Cole Middle School. I met Nicky today for the fist time. What a sweet young man! I look forward to working with Nicky and helping him and his family in anyway possible :) |
| Name: | Darryl Burton |
| E-mail address: | dburton@ma.rr.com |
| Comments: | I found this website very useful! I have three step children with JEB. One thing I am getting tired of is Child Protective services being called on us all the time because people think we are burning our kids with cigarettes or something. Here in West Virginia the authorites seem to know nothing about EB, and don't believe you when you inform them! It's very frustrating! |
| Name: | Cisaltina Pinto |
| E-mail address: | cisaltina8@hotmail.com |
| Comments: | Hello. I am a rehabilitation nurse from Portugal. I have a teenager patient with this disease and i felt that i have to know more about it, to kive him some more quality of life. Thanks for the help. If you need some suport i´m here too.
Cisa Ps: Sorry, my english it´s not so good. |
| Name: | Jennifer McCaughtry |
| E-mail address: | mccaughtry@charter.net |
| Comments: | I ordered the "Living with EB" book and read it the day I got it. It was wonderful. My daughter Mareyna has EBS and she is 3. I have ordered the bracelets from you before too. Thank you so much for all that you are doing to help spread the awareness. I am telling all my family and friends to get the book because it was so great. Hopefully someday they will find a cure and our kids won't have to suffer any more. Thank you, Jennifer |
| Name: | Virginia Crayton |
| E-mail address: | Jennyloubucket21@yahoo.com |
| Homepage URL: | http://myspace.com |
| Comments: | Hi my name is Jenny and is short for Virgini my mother says. Im only 13 and i never knew about her till i saw this movie "the Queen" and so i wanted to see pictures of her on here and i saw this website and i wanted to say that she was a wonderful lady to the people of England. Im sure alot alot of people terribly miss her. My mom told me alot about her and i saw all of this and learned more and more about her and so i might to a project on here next year in the 8th grade. I do wish she was still alive and so we can see her good deeds still roam England even though i live in America, North Carolina. But she was so generous and loving to all the people and i think she would have made a magnificent Queen even she thought she wouldnt.
Sincerly Virginia Crayton July-23-07 |
| Name: | Lydia |
| E-mail address: | lydiajjudd@yahoo.com |
| Comments: | My angle Tamara Lynn was born 10 weeks premature. With Apnea, an Atrial Septal Defect, Ventricular Septal Defect, von Willebrand's disease and just last week was diagnosed with Epidermalysis Bullosa. I have cryed everyday since I found out about EB. I hate to see her suffer and hope that with education and god's help I can give her the best life possible. I know what all you other parent's are going thru! You are not alone with this! Somewhere out there somebody is going thru the exact same thing, remeber that! |
| Name: | Deborah |
| E-mail address: | ddurban@hotmail.com |
| Comments: | first of all I would like to send my blessings to all the children with EB, my daughter had a baby 10 week's ago and we have been told she has EBS it's been a very stressfull time for us and painful to see such a little thing go though so much at such a young age,we are all so worried about her because we don't no alot about it only what we read on the internet,I would be so greatful if some one out there could put are minds at rest and tell's us what we will be facein god bless you all myself and my daughter and grand daughter akeelha as are heart with you all |
| Name: | keijo |
| E-mail address: | keijoleppioja@hotmail.com |
| Comments: | Let us hear what God have to tell to us in this last time too,andlet us belive in his love and care and be wise and holy with peace and harmony,help too the lose men that find savior and healing,pray for blessed revival soon.Thanks and bless and love.keijo sweden |
| Name: | kelly joyce |
| E-mail address: | kellyatjcb@yahoo.com |
| Comments: | hello, I know first hand what you are going through, I was born 39 years ago with no or adnormal finger nails, blisters in the mouth, hair, feet, knees, under my nails, elbows, hands, the blisters also were found in my kidneys and bladder, which had deformed my bladder to the size of a newborn's, I had to have surgery and reconstruction with a urine bag for 10 years. these blisters would start small and then over a couple of days would take over my whole leg or hand, to walk was very painful, I didn't like having people always asking what happen to me, did I get burned? I was picked on by many kids in school because I looked aweful and people never even heard of this condition,and did not understand, this was a extremely rare disease at the time. At age 16, I wanted the urine bag off, the glues and belts to hold it on would make blisters and I had enough, the doctors built me a bladder out of my small intestines, and it works, I got married at 20 and have to beautiful boys, travis 17 and tim 12, I still struggle every day, but don't let it get in the way. i hiked up franconia notch with my youngest on a field trip, 7 1/2 miles straight up hill, my son wasn't going to go because of my condition, but I insisted we do it and I was going to take alot of pictures at the top, because I knew that would be the only time i would be there. I blistered for two weeks after and was in alot of pain and infection had set in, but I would do it again to see my sons face and what we did together. I never had heard or seen another person with this disease, and now it is known throughout. I do have to be check for skin cancer yearly, and had surgery to remove small moles. I live each day like it is my last. now I worry about my children passing it along to their children. they do not have it. because of websites like yours, i'm learning more about what other people go through, your in my thoughts and prayers
Kelly Joyce deering, NH |
| Name: | amy james |
| E-mail address: | amy_james_13@hotmail.co.uk |
| Comments: | i am sorry for your loss and see is reeally cute i hope she rests in peace |
| Name: | shayle and brogan |
| E-mail address: | monkeygirl_1@hotmail.co.uk |
| Comments: | your website realy touched us brogan was so cute and i hope she rests in peace. |
| Name: | agbadaman |
| E-mail address: | agbadaman@yahoo.fr |
| Comments: | great site |
| Name: | francesca |
| Comments: | i realy loved readin your website from francesca mcgregor
|
| Name: | Trish |
| E-mail address: | trishannj@hotmail.com |
| Comments: | I am the nurse of a patient with EB. It was my first encounter with the disease. After reading more about it from your site, I didn't realize what this child has to go through and I actually started crying because the quality of life is so vulnerable. This child has had chronic pain, yet when he's awake he still has a smile on his face. Thank you for the wealth of information you have put into this website, one that is very easy to comprehend. |
| Name: | Brandy Enlow |
| E-mail address: | sammie1966@yahoo.com |
| Comments: | I really appreciate you all putting my niece on the EB infoworld web site.Hopefully more people will look at these beautiful and special children and more can be done to find a cure.Thanks again.
The Family Of Hannah Enlow |
| Name: | Daniela |
| E-mail address: | macko1000@orangemail.sk |
| Comments: | Hi,I´m first time on this page,
I´m from Slovakia and I interest in EB, because of I have friend with this desease. |
| Name: | mike vary |
| E-mail address: | mike@allfab.co.uk |
| Comments: | hi just startd working with a married couple both whelchair users and he has EB. They are moving into the community an amazing couple hope they do well they deserve to. |
| Name: | Samira |
| Comments: | Hey! I love this site. I'm really sorry for these amazing kids. My sister is 17 years old. She has EB and recently went through 3 hand surgery. She goes amazingly with it. |
| Name: | Lisa |
| E-mail address: | letsrun2388@aim.com |
| Homepage URL: | http://goozy101.livejournal.com/ |
| Comments: | Hi, I'm 18 years old and I'm researching epidermolysis bullosa for a project in my anatomy and physiology class. I first found out about EB by reading a magazine article about a young boy who had it. It got me so sad so I chose it as my topic to inform others about it. Your website was very helpful and informative and I only wish the very best for you and your son. Best of luck with everything that comes your way. |
| Name: | Kate Koggel |
| E-mail address: | kkoggel@sympatico.ca |
| Comments: | I am just a mother and grandmother who is blessed that eb has not affected my family, but it doesn't stop me from wanting to learn more, and from wanting to do what I can so little ones could be gifted with a cure. |
| Name: | Lori |
| E-mail address: | lorilani@gmail.com |
| Comments: | Hi, I saw a program on discovery health tonight on EB. It reminded me of this girl featured on your site for the christmas cd that was released a few years. Jamie Gibson. I knew her on a military base in Dugway, Utah. (when I was age 4-8) This girl was so normal and such a friendly happy person despite her condition. It is so inspiring to see that she is still here on earth and is successful going to school and more!
I have a clipping from the National Enquier It's really hard to hear some of the stories or see the scars and that is what touches your heart. To all the people with EB thank you for touching everyone in the ways we never thought possible. Keep on living, thats all we need :) |
| Name: | Alex |
| E-mail address: | a_avant@yahoo.com |
| Comments: | Hi. I really liked your website. It was very informative. I'm doing a research paper on Epidermolysis Bullosa and Necrotizing Fasciitis. I think your site is good and got some good information from it. Thank You.
Also, I'm so sorry about your son. -Alex |
| Name: | katherine Couture |
| E-mail address: | kc339@sbcglobal.net |
| Comments: | I just met someone with this condition, and wanted to look it up to find out more about it.
I have children and I feel for this child. My heart and prayers go out for this young man, as they do for everyone coping with this unfortunate condition. Katherine |
| Name: | cecile |
| Comments: | hey, macias.i got your e-mail but there is something wrong with my e-mail and i can't send out anything.but yeah.no cure. just a suit.i know what i'm gonna do. a already wrapped gauze suit that is loose when put on the child and then i draw string to tighten the gauze. it really just is to make the wrapping process easier. i read it can take a long time to wrap kids in the gauze so this just makes it quicker. |
| Name: | R. Macias |
| E-mail address: | Macias62@sbcglobal.net |
| Comments: | This is my first time that I became aware of EB as I was reading People magazine. I was doing research for a speech presentation when I came across EB. I have made a commitment not only to myself but also to all the people that suffer from EB.
R. Macias |
| Name: | Natalie Dominguez |
| E-mail address: | mspolly12@yahoo.com |
| Comments: | I'm really happy to see the amount of information that is available about E.B. My eight year old Isaiah, the youngest of six, has recessive dystrophic E.B. God has blessed him with, strength, courage, and an undying desire to live. I hope that God provides you and all other E.B. families with the endurance and strength to continue fighting for these beautiful children. |
| Name: | Nicole |
| E-mail address: | nbursey34@yahoo.com |
| Comments: | Being a mother of a beautiful newborn baby girl with EB, I am learning new things everyday. Thank you for sharing your story it helps out new parents like me.
Thank you. |
| Name: | Julie Dollar |
| E-mail address: | julie.dollar@sbcglobal.net |
| Comments: | Thank you for educating parents on this tragic disease. My heart goes out to the families and I cannot even imagine the strength and courage these little children have inside. God bless. |
| Name: | crystal |
| E-mail address: | sara@yahoo.com |
| Homepage URL: | http://google.com |
| Comments: | hi,i read in a magazine about a boy with eb.I give wishes to all with a eb patient, or someone who lost thiers, i'm sorry. |
| Name: | Consulla |
| E-mail address: | artlsmith@msn.com |
| Comments: | My son suffers from EB. My prayers are with you and your family. Just want to leave you with what my husband and I have told my son. "GOD HEALS YOU FROM THE INSIDE OUT." |
| Name: | Kiera Walker |
| E-mail address: | kiera_a@email.com |
| Comments: | I visited your sight because I plan to do an informative speech about EB for my public speaking class. I would like to enhance the awareness of this disorder and I believe together we all can make a differnce. |
| Name: | Cecile |
| E-mail address: | cecile_b_demented@yahoo.com |
| Comments: | i just want to say you have my support. i only know about this awful disease from reading a magazine article in people. in my science class, we have to invent something to benefit people's lives. i have to do something on EB because i want to help.please, if you have any ideas e-mail me because i want to help. my idea was a special suit but i don't know enough about the disease to know what fabric i could possibly use besides gauze.well, please. and for the parents of kids with EB, i'm dedicating the invention to you.sincerely, C.B. |
| Name: | Janet |
| Comments: | I came to your website after reading about the boy in the recent People magazine with EB.
As a mom and nurse I can't begin to imagine your daily heartbreak. I had never heard of this disease until today. Your son is beautiful. God Bless your family. thoughts and prayers are with you. |
| Name: | badra ahmad |
| E-mail address: | badra_nyc@yahoo.com |
| Comments: | No child should ever have to go through this,seeing your sons pictures broke my heart. |
| Name: | Jennifer |
| Comments: | My heart and thoughts are with you all! This is something that no child should ever have to go thru. |
| Name: | Jennifer |
| Comments: | My heart and thoughts are with you all! This is something that no child should ever have to go thru. |
| Name: | Jennifer Gomiller |
| E-mail address: | jengomiller@wmconnect.com |
| Comments: | I am Aa'Leigha's grandfathers girlfirend. I have been around Aa'Leigha since the day she was born. She is an inspiration to us all and is loved deeply. You hardly ever see her with out a liitle grin on her face. She is truly a blessing to everyone who meets her. |
| Name: | Sara |
| Comments: | I am a mother of a son with EB. It is overwhelming at times to feel like you take one step forward and then two steps back when dealing with blisters and EB, and traveling all over the state in order to meet with a doctor that has actually seen this disease. I commend you for making a site dedicated to educating others about this disease. My prayers are with you and your family. |
| Name: | Paul Nobles |
| E-mail address: | PAULNOBLES@YAHOO.COM |
| Comments: | hey there ~ my mother had EB and lived to 50 years young. everyone who knows her says she is the greatest strongest woman they ever knew. I am the luckiest man alive to have had her as my mother. I miss her, and know she is a true angel. Please know that you are in our prayers everyday.
Paul |
| Name: | Vanessa |
| E-mail address: | tiiiguh@aol.com |
| Comments: | HI Nicky, I am so sorry to hear about your disorder, but I know you are a big man...you'll show them you keep up with your school work and get all good grades..your mom is so proud of you and I hear that you are very intelligent, one day you will come up with the cure for EB. Good luck young man...and stay strong. |
| Name: | sian roalf |
| E-mail address: | djroalf@nb.sympatico.ca |
| Homepage URL: | http://www.google.ca |
| Comments: | i am very sorry to have heard about this disorder. it must be hard for the kids to do what they want like sports, dodge ball and all those. |
| Name: | Amy Loy |
| E-mail address: | amykin92@yahoo.com |
| Comments: | Hello my name is Amy. I would really like to say I am extreamly sorry about this disorder as they call it. I am doing a research paper on epidermolysis. It is really heart braking to hear about this. My school is writing research papers on disorders and I saw this one and it looked interesting. I had no idea how hurtfull this could be. I am only 13 and I would like to ask some questions on what it is like. Maybe you could write me back and I could email you my questions. I hope you can email me before the 2 of February 2006 you will always be in my heart. I will keep you in my prayers as well.
Thank you so much, AMY LOY |
| Name: | Amy Loy |
| E-mail address: | amykin92@yahoo.com |
| Comments: | Hello my name is Amy. I would really like to say I am extreamly sorry about this disorder as they call it. I am doing a research paper on epidermolysis. It is really heart braking to hear about this. My school is writing research papers on disorders and I saw this one and it looked interesting. I had no idea how hurtfull this could be. I am only 13 and I would like to ask some questions on what it is like. Maybe you could write me back and I could email you my questions. I hope you can email me before the 2 of February 2006 you will always be in my heart. I will keep you in my prayers as well.
Thank you so much, AMY LOY |
| Name: | kim |
| Comments: | my friend's researching on this site for a school project, and it makes me want to cry, just looking at it! you all must be so strong! |
| Name: | Vicky L. Gash |
| E-mail address: | vickyndaryle@sbcglobal.net |
| Comments: | My heart breaks every time I view the websites of children and adults and young adults with this horrific disease. All your stories should be televised because all of you are amazing. Only God can keep you strong like you are. Praise His Name.
I totally support the research and awareness efforts. I didn't learn of this devastating disease till I saw THE BOY WHOSE SKIN FELL OFF. Since then I have been a warrior for all of you. I am praying for all of you and that the Lord will indeed find a cure. God Bless you all God's Peace to you, Vicky L. Gash |
| Name: | MELISSA GRAY |
| E-mail address: | MGRAY@FIRSTQUALITY.COM |
| Comments: | my daughter has RDEB and is 4 years old. |
| Name: | Nagy Victor, Romania |
| E-mail address: | nagyiki@yahoo.com |
| Comments: | Az isten aldjon meg........ |
| Name: | Amy Loy |
| E-mail address: | amykin92@yahoo.com |
| Comments: | I hope your dreams come true |
| Name: | April Nicosia |
| E-mail address: | anicos15762@dcc.edu |
| Comments: | My name is April and I am a student at Delgado Community College in New Orleans, LA. For my Anatomy class, I am required to write 4 papers and on 4 different diseases, I wanted to write about a disease that not many people have heard about. I have not heard of EB before and I was very sad to hear of the terrible pain that these children have to endure. I will do my best to bring awareness to this terrible disease. I also have a Brownie Troop. After learning more about this disease, we will be having a garage sale to raise money for EB and we will make an on-line donation. EVERYONE GOD BLESS AND WE PRAY MORE AWARENESS, TO FIND A CURE. |
| Name: | Sarah |
| E-mail address: | rebel_chick_54@hotmail.com |
| Comments: | I am currently an Occupational Therapy Student in my Sophmore year. While I was doing my field service I was placed with a young girl suffering from this disorder. Never in my life had I imagined that I would be assisting someone with such a dibilitating ailment. I just want to say thank you for starting this website as it is a wealth of information for a upcoming OT. My heart is with the young lady I visit every week, as it is going out to all of the families and sufferers. |
| Name: | jada rose |
| E-mail address: | happiestinspring@aol.com |
| Comments: | i think yhis site is really nice---it's to bad the royals seem to have forgotten all about her-- when she did soo much to bring them into our hearts and homes-- before diana noone cared they were just nobodies!!!!!!!!!!!!!!! |
| Name: | Carina |
| E-mail address: | haglof69@hotmail.cm |
| Comments: | Hi everyone!
This may not come out the way I mean to, but I write out of love. I live in Sweden and my enlish is pretty bad, but I hope you understand me anyway. Today I was home with two of my boys (I have four) and we watch a show on TV on a boy (man) called Jonny, whom I think lived in England, who had DEBRA. I thought to myself that I wish so badly that I could do something to help. And how do I help when I dont know what kind of help you need. All I can say that if you ever want to come to Sweden, my home is open to you. Best of love and hope, Carina, Someone who think of you all. |
| Name: | Virginia Tallmon |
| E-mail address: | virgy49@yahoo.com |
| Comments: | I am a RN who cares for 2 kids with EB. The oldest is 21 and the youngest is 8. They are from the same family and the 2nd and 7th child in the family. It is a horrible and dibilitating disease. The pain, and disfigureing aspects of this disease are astronomicle. Not only do the kids suffer every day of their life but the other family members also suffer. How much fun is it to watch you child or sibling suffer with this pain every day. Not only the physical pain but also finacial pain. I only have to deal with it 3 to 4 times per week and the family has to deal with it 24 hours a day. My prayers and thoughts are with you and anyone having to deal with this horrible disease. We have to find a cure!!
Sincerely, Virginia Tallmon RN |
| Name: | Pamela Parker |
| E-mail address: | parker8414@bellsouth.net |
| Comments: | My name is Pam Parker and I live in Laurinburg, North Carolina. I have a child with Recessive Dysrophic EB. She is 5 years old and she already ask when is Jesus going to heal her BOO-BOO'S. So, I know how you guys feel, it is a terrible thing to watch your baby girl hurt and mommy can't do anything, but pray. God has a will, so stay strong and never give up.
Have Love & Prayer, Pam and Aa'Leigha Parker (baby girl) |
| Name: | Haley Belliveau |
| E-mail address: | kraizee_16@hotmail.com |
| Comments: | Thank you so much for sharing this, I am doing a biology project on this disease. Im glad you helped make me and my friends more aware of this condition.
-haley |
| Name: | Tara |
| E-mail address: | gcs1stladie@yahoo.co, |
| Comments: | My thoughts and prayers are with the families and those who suffer from this terrible disease. |
| Name: | Cheryl Draschil |
| E-mail address: | cheryl@draschil.com |
| Comments: | Jamie, my daughter Rachel told me you got married but she lost the info on it. I want to congratulate you and pray you have a wonderful marriage. I didn't think of going to your website before now or I would have sooner. Thank you for thinking of me. It's a privelage to know you. Love, Cheryl. |
| Name: | Elisabete Dorneles |
| E-mail address: | aebe@aebe-debra.org |
| Comments: | I'm nurse, i work with children in pediatry for 8 years but i have never seen nothing like the cronic suffering provocated by EB. Let's all help the way we can, sometimes what we believe not to be important can mean a great help for the EB afecteds. It is impossible to remain neutral after you know about EB, let`s join our efforts.
Wishing you all readers all the best and EB afecteds a word of streinth. Elisabete |
| Name: | Neeka |
| E-mail address: | rockergirl9225@yahoo.com |
| Comments: | Wow! I am really touched. May a miracle be blessed upon all the families who are suffering the condition of EB. My heart and prayers are with you. :) |
| Name: | Tara |
| E-mail address: | marbug23@aol.com |
| Comments: | I have a two year old who suffered second degree burns from scalding water. I saw the pain she was in, and it broke my heart. Her wounds have now healed, and she is amazing. When I spoke to a mother of a child at my daughter's daycare, who I had assumed had been burned, I learned that the little girl did not have burns, but lives with RDEB. It breaks my heart that any child has to live with such pain, and deal with individuals that dont' try to understand or learn about EB. My daughter's pain was temporary, and still caused me great distress having to see her go through it. These parents have no choice but to find a way to deal with it, and love their child with so much compassion. This website has touched me and affected me in a way I didn't realize I could be affected. I will always hope for the best, and for more effective treatments-or even better- a cure. |
| Name: | ashley |
| E-mail address: | ashleysteimke@earthlink.net |
| Comments: | i saw the program "the boy whose skin fell off" this was the most touching show ive ever seen. i was wondering if anyone knew how to get a copy of it?...
let me know thanx |
| Name: | Lisa Bell, RN |
| E-mail address: | dlbell@optonline.net |
| Comments: | I am a school nurse in a school for children with learning disabilities. We are possibly accepting a 7 year old girl with DEB. I found your site very helpful and informative. If especially fornd the information on schooling quite informative. If you could direct me to any other sites that would be helpful, regarding the educational setting for these children, I would appreciate it.
Thank you! Lisa Bell, RN |
| Name: | Katie Novotny |
| E-mail address: | kjnovotny@hotmail.com |
| Comments: | All my thoughts and prayers go out to all the children and adults and their families living with EB. You are all very strong and couragous. Thank you for sharing your stories. |
| Name: | Robyn |
| E-mail address: | robyn@e-wire.net.au |
| Comments: | Thoughts and prayers are with you always. |
| Name: | Silvia Bittencourt |
| E-mail address: | shbittencourt@globo.com |
| Homepage URL: | http://www.casadavovoza.bigblogger.com.br |
| Comments: | Hi namesake,
Silvia dear, as my name is Silvia too, I found "namesake" for the word "xará" in portuguese.I am Brazilian,live in Rio de janeiro, southeast of Brazil,South America. I love the creddy bears and I thank them now,cause i was able to find your website! I read about the EB and if i can help you in anyway, to support your cause,please tem me how,ok? I wish you and your family a very peaceful 2006, and may the Lord's warmth and comfort help you throuhout your lives! All the best! Ksss Vovoza(granny)/Silvia |
| Name: | Julia Cheong |
| E-mail address: | cheong_kava@hotmail.com |
| Comments: | I known this disease when i have a presentation about this topic in my intern life. Hope that all patient with this disease will become beter and better, also, doctors can find more techniques to help them.
God loves all people. God bless you. |
| Name: | Sarah Unruh |
| E-mail address: | la_fille_bleue916@yahoo.com |
| Comments: | I first heard of EB when I saw the documentary called "The Boy Whose Skin Fell Off." The show was about Johnny Kennedy, his condition, his life, his last moments alive, his death, and most important of all, his efforts for debRA and for others with EB. His story was so touching and so moving, I just can't imagine what it's like for people like him and their families. It makes me very thankful for everything I have because of that one small glimpse into his life. I now appreciate the little things, knowing how, for many people, those little things aren't little at all. For all of those with EB and all of those close to them, you have my support and my compassion. Love,
Sarah |
| Name: | Lisa Ellis |
| E-mail address: | lisaellis5@hotmail.com |
| Comments: | I am 16 and have EB but I was very lucky, I got the lowest of the 3 forms. My father has it too and that is how I got it. There is a 50% chance of me giving it to my children which is really sad because I really do want to have children but I am afraid to do so. I look like a normal child(because I grew out of it) but my nails and toenails are thicker and off colored and my doctor says that it can happen with people who have my condition. I have tried many things to try and fix this problem but nothing seems to work. It is really hard being slightly different than the other kids are but I need to keep remembering that I am lucky and am going to live through this condition. I am very glad that you have a website to help support children and their family members that have this disease. |
| Name: | georgiana porter |
| E-mail address: | gpo1357270@aol.com |
| Comments: | In 1966 i had a child sean with this disease he lived for 10 days he was our second born the first child was healthy and four after were also healthy although the boys all have minor facial rashes esp. in the cold months.My little one was 36 wks. gestation and always kickking before birh I felt sick for about 2 days before he was born. The pregancy was good up until delivery I did have x-rays for twins for years felt this contributed to his condition so little information was available at this time. My prayes are with the children,georgiana. |
| Name: | Deja |
| E-mail address: | Re2914@aol.com |
| Comments: | I am deeply moved by Silvia's son little Nicky, and by Silvia herself. I admire her strength and love and most of all the continual reach for a cure. I have never heard of this disease before and want to do my best to help and get word out for all those effected by it, at least to the people I knpw and come in contact with. I pray we find a cure and trust that God will intervene in the lives of all those effected. Butterflies are my favorite, and my heart just yearns to help these fragile individuals who teach love strength and the true meaning of life. God has already blessed all those effected and I know they live everyday knowing the true meaning of living, love and appreciation. May god bless you continually and know that this girl is rooting and going to help contribute to finding a cure :) |
| Name: | Henry Rosner |
| E-mail address: | henry.rosner@geopaix.org |
| Homepage URL: | http://www.geopaix.org |
| Comments: | I just watched the programme on Discovery Health Channel called "Medical Incredible" and it featured a segment about a young woman named Christina Perez who has lived all her life with EB. I was absolutely amazed at her inner strength and tenacity. I had a friend who unfortunatly passed away in May of 2002. She once told me that God only gives people what they are capable of handling. She had a very aggressive form of spinal cancer and at the end went very fast. I suffer from Degenerative Disk Disease, MS, Rigers, Kidney stones (from the dead nerve cells) and I'm on a continuous feed of morphine so that I can function to some degree, All we folks can do is take in as much of live as we can while we're able to. I noticed that Christina had a little white dog and a cat. Animals help unbelievably with pain. I have a dog and three ferrets and when my pain level gets up there it's almost that they know I'm feeling bad and they either cuddle up with me on my bed or curl up near my pillow and let me pet them. Anyway Happy Christmas to all and a very Happy and Healthier New Year to y'all...... my prayers will be with you. |
| Name: | Kim |
| E-mail address: | kimsedona@aol.com |
| Comments: | I just saw the story on Christina Perez on Discovery health and was moved to write to all of you. Something inside me told me that I needed to get some information to all patients with EB. It was when I saw the part of how the disease takes most of the nutrients and often leaves you anemic and weak. I feel I need to tell you about a food specialist named Aajonus Vonderplanitz. I have been following his raw foods diet for three years now and it has transformed my life. It is NOT vegetarian only raw foods. It has high protein/meats, eggs, dairy, etc that are eaten.
It is very hard for me to explain, there is so much to it, but I can tell you that he has healed nearly every ailment I have ever heard of and I have not met one person yet that has not felt better after trying it. At the very least, I think it would make these children stronger and not anemic. The general idea is that cooking destroys vital nutrients in foods (all foods) and their bodies especially need huge amounts of nutrients to heal. Foods in their raw forms provide all the necessary vitamins, amino acids, enzymes for healing. Something told me to contact you. I know he can help. To get him, just Google Aajonus Vonderplanitz or order his books....We Want To Live and Recipes for Living without Disease. I believe he can change your life. It is not easy to eat this way. It took me three years to even be open to it, then another two years to transition to raw now...I have been totally raw for three years and have never felt better in my life!!! If anyone wants to contact him by phone or email....just email me at kimsedona@aol.com and I will give you his contact information. Kim |
| Name: | Kim |
| E-mail address: | kimsedona@aol.com |
| Comments: | I just saw the story on Christina Perez on Discovery health and was moved to write to all of you. Something inside me told me that I needed to get some information to all patients with EB. It was when I saw the part of how the disease takes most of the nutrients and often leaves you anemic and weak. I feel I need to tell you about a food specialist named Aajonus Vonderplanitz. I have been following his raw foods diet for three years now and it has transformed my life. It is NOT vegetarian only raw foods. It has high protein/meats, eggs, dairy, etc that are eaten.
It is very hard for me to explain, there is so much to it, but I can tell you that he has healed nearly every ailment I have ever heard of and I have not met one person yet that has not felt better after trying it. At the very least, I think it would make these children stronger and not anemic. The general idea is that cooking destroys vital nutrients in foods (all foods) and their bodies especially need huge amounts of nutrients to heal. Foods in their raw forms provide all the necessary vitamins, amino acids, enzymes for healing. Something told me to contact you. I know he can help. To get him, just Google Aajonus Vonderplanitz or order his books....We Want To Live and Recipes for Living without Disease. I believe he can change your life. It is not easy to eat this way. It took me three years to even be open to it, then another two years to transition to raw now...I have been totally raw for three years and have never felt better in my life!!! If anyone wants to contact him by phone or email....just email me at kimsedona@aol.com and I will give you his contact information. Kim |
| Name: | shammy |
| E-mail address: | shammy@hotmail.com |
| Comments: | I have EB,when i was younger my skin did blister but i havent had one for about 5 years now, i can play cricket and football and my skin doesnt rip or tear but its still quite fragile |
| Name: | Ruth |
| E-mail address: | princessanne1026@aim.com |
| Comments: | Hi my name is Ruth, and I'm 15 from New Jersey. I had never heard of this disorder in my life until a few hours ago when I was watching the discovery health channel. It was a show about a girl named Christina Perez (I believe- not sure though) who had EB. I think she is involved witb this website too, because I remember the narrator saying that she was involved in an EB website and I saw a butterfly background. But anyway I was crying by the end of the show, and even though I cannot imagine what you guys are going through.. you have my support. Thanks for reading this. |
| Name: | Diana |
| E-mail address: | ortega640@peoplepc.com |
| Comments: | Hi there! My name is Diana I am 34 yrs old and I live in Dallas, TX. I have EB SimplexDM. I also have two beautiful daughters who also have EBSDM. Olivia Nicole is my oldest she is 4 1/2 and my newborn is Sara Sofia, she is almost two months old. I do not know any other life than EB. I was lucky to be raised by a big family who gave me a lot of love and support. Now my husband of 13 years has continued to give me love and support. He now shares that with his girls. It is harder for him sometimes because these are his girls and he hates when people stare or make comments, but I tell him to ignore it. EB in a child is new for him as well as for me. I knew how to take care of myself, but when we decided to have Olivia everything was new for me. Olivia was also born with a cleft lip & palate, and she is also hypothyroid and the EB. So she had a lot on her plate and she has done wonderful. I am so proud of her. She is now in school in pre-K. As for Sara she is healthy, aside from the EB. If anyone lives in DFW area or in Texas please send me an email. I would enjoy meeting other EB families. This website is wonderful and very helpful, since I found it about a week ago I have come back everyday. Thanks :-) |
| Name: | Alicia |
| E-mail address: | algudino@maxhealth.com |
| Comments: | I just met a beautiful little girl and I have been truly blessed. Throughout the ordeal of having EB, she was busy wrapping gifts that she will share with her loved ones, this holiday season. I know she is in alot of pain, as seen in her eyes, but at the same time she wants to share joy and happiness with her loved ones.
Thank you so much for sharing your messages with all who have been in some way affected. Most importantly thank you for providing a pathway to the parents of these children to learn everything there is to know about EB. God Bless you all and praying for a cure for the suffering. |
| Name: | Chris |
| E-mail address: | christiencn@aol.com |
| Comments: | I'm an RN who works with a child with JEB, I had never heard of the disorder until I began home care earlier this summer. I watched the Jonny Kennedy story last week on TLC and was impressed by his strength and courage. (Having seen the damage first hand that EB causes, I was not shocked by his wounds and the pain of dressing changes, so I could really focus on him as the beautiful, caring person with a quirky sense of humor that he was.) I am inspired by my little EB patient because she's always happy, smiling, and loving life despite the intense pain her dressing changes cause. I don't know if I could be that strong!
|
| Name: | Chiria Duncan |
| E-mail address: | cdduncan@uncg.edu |
| Homepage URL: | http://www.myspace.com/chiria880 |
| Comments: | Hello,
I just stopped by to check out the website.Last night was the first time i had ever heard about EB.I learned about it from the TLC channel on the story of Johnny Kennedy:The Boy Whose Skin Fell Off.That was such a heart touching story and his struggle inspired me.May his soul Rest In Peace Forever. |
| Name: | Lynette |
| E-mail address: | lkpauls@hotmail.com |
| Comments: | I watched the show last night about EB and Johnny Kennedy- I have never heard of the disease but it is about the most awful disease I have ever seen. I pray for those afflicted with it and their families and friends for the loving care they give. |
| Name: | Kenya Jerome |
| E-mail address: | kjerome@utm.edu |
| Comments: | I just saw the show of the show of the boy whose skin fell off and I was so touched by it. It is hard to image how much the human body can indure so much pain. Johnny McKinney showed my how much life really means to me. I cried last night and I thanked God that I have a healthy little girl. For every minute that I have her I am going to cherish it until both of us leave this world. |
| Name: | Gladys Pinto |
| E-mail address: | Gladlynne@hotmail.com |
| Comments: | I watched a tv show last night on TLC about EB. I had never of of it until now. My heart was touched and I pray to God to help these children and adults with the awful and painful disease. I have 3 grandchildren and I can't imagine never being able to put my arms around them and hold them and hug them. I can't imagine having to see them in such constant pain. I glad I have a chance to learn about the rare condition and I want to learn more about it. The word needs to be spread to get money for research and people need to become educated about this disease.
My prayers are with you and all EB patients. I send my love in the name of Jesus Christ, Gladys |
| Name: | Justin Coker |
| E-mail address: | SoccerPlayer1702@yahoo.com |
| Comments: | I have just heard of this illness on television today ,and I wish with all my heart that I had the cure to eraticate it from all the ones who are suffering and the one that will in the future. All the families will be in my prayers
|
| Name: | jeanette almond |
| E-mail address: | jeanette_almond@msn.com |
| Comments: | sweet dreams in heaven to a special rose, a rose who will always bloom in gods garden and my heart.
You will always be someone special and in my thoughts forever merry christmas and be happy love forever and ever rebecca love the almond family xxxxxxxxx love you |
| Name: | debbie quick |
| E-mail address: | dq_loves_bobby@yahoo.com |
| Name: | Clare Cohen |
| E-mail address: | clarecohen@hotmail.com |
| Comments: | I am sponsoring someone who is raising money for DebRA and I cannot think of a more worthwhile cause. Good luck.
Clare Cohen |
| Name: | debbie |
| E-mail address: | bwa122@yahoo.com |
| Comments: | MY GRANDSON WAS BORN ON SEPT.23,2005. THIS WAS THE FIRST TIME I HAVE HEARD OF THIS CONDITION. MY DAUGHTER LIVES IN FLORIDA AND I LIVE IN NORTH CAROLINA. SHE TOLD ME WHAT TO EXSPECT WHEN I SAW HIM FOR THE FIRST TIME THE WEEK OF THANKSGIVING BUT WHEN I SAW HIM I CRIED KNOWING THAT SHE WOULD NOT BE ABLE TO HOLD HIM. IS THERE ANY SUPPORT GROUPS IN TAMPA,FLORIDA THAT SHE MIGHT BE ABLE TO CONTACT? THE HOSPITAL IS GIVING HER A HARD TIME BECAUSE SHE IS ONLY 18.THANK YOU AND GOD BLESS YOU ALL |
| Name: | Julia |
| E-mail address: | JLopez_JV1@msn.com |
| Comments: | Hi. i had do a report on this disease for school. i never heard of this disease before. but im glad i do know about it now. i pray at night hoping that they will one day find a cure for this disease!!! well, you are very strong inside and all you have to do is pray!! and don't forget that god is the answer. Just pray and one day everything will get better! |
| Name: | Don and Jean Smith |
| E-mail address: | dj6445@sbcglobal.com |
| Name: | Kacci |
| Comments: | I am currently about to start nursing school and work in a hospital. I viewed a program on t.v. titled "The Boy Whose Skin Fell Off". It was apperent to me that I had no other choice but to research this disease. I am not sure why things like this happen to wonderful people like you, but know that God has a special place for you. I hope in the future that if in my career I have the privlage of meeting someone who suffers from this disease that I will be able to make a difference. Being surrounded by sick people on daily basis I know is hard but the blessings you can bring them are unmeasurable. I know personaly that often the patiens we are there to "help" end-up helping us, teaching us, and being the most remarkable people I know. Please do not be discouraged by people staring at you or talking about you--- one day you may be their saving grace. All of you, sufferers and family alike, are in my prayes. He will provide.
Kacci |
| Name: | Diann Diaz |
| E-mail address: | diann17diaz@yahoo.com |
| Comments: | I too had a term paper for the end of the semester on genetic disorders and I chose EB after searching the web. I just want to commend you for being such an amazing and strong mother, I hope and pray one day a cure will be found but in the mean time I am so happy you are making every day with your son worthwhile. I love children and it makes me feel so good that you are a mother who is not afraid to speak out. Your son is adorable, my little brother likes Shrek too. |
| Name: | alicia fields |
| Comments: | I was asked to do a paper for school on disease ans this particular one stuck out but I had no idea what it was but I am more interested than just this paper. your family and all families dealing with this are in my prayers for a cure. |
| Name: | Sean Killin |
| E-mail address: | couch238@netzero.net |
| Comments: | Hello, im 14 years old and a older brother tomy little sistr kelly ann who has signed this book has junctional EB. it's hard for everyone who knows her. she just like everyone else and that's the problem. she wants to run and play but she has to restrict herself to not fall down or scratch herself because if she does it is like 100 times worst than if i or a person without EB falls down. she plays basketball which scares me everytime she plays because she is so aggressive. i love this site and it is very accurate on the effects EB has on someone. |
| Name: | Lenka |
| Comments: | I was looking on google for pictures of Sleeping beauty for children i work with in a nursery, and run across the picture of Sophia who died due to having EB. I have never heard of this deseas before and i had to stop and read this.
I have children of my own and i can't even imagine how i would cope if anything like that happened to my family. I just want to say that you are very brave people and i wish you all of you well and happiness in the future. Love Lenka |
| Name: | Brian |
| Comments: | Until tonight I had never heard of EB. I am a nuring student in Denver and my clinical scholar wanted me to do some research on EB. Thanks to your website I now have the knowledge to better help any patients that might enter my future practice that suffer from EB. My thoughts are with you all. Live strong, love much, laugh often. |
| Name: | kelly ann |
| E-mail address: | couch238@netzero.net |
| Comments: | This site is sooo true! I love the poems and shirts and everything! I am 12 yr. old and have junctional epidermolysis bullosa. I have it better than most of the kids, but my mom still has to suffer the same thing as every other parent! She is the only reason I have made it this far! Becuase of her I have grone stronger inside to where it doesn't matter how fragle my skin is or who stares at me or anything! Because of her I am 12 yr. old and I am now playing basketball. Becuase of her, I am who I am today
love to all kelly ann |
| Name: | hannah |
| E-mail address: | fall_outgirl88@yahoo.com |
| Comments: | at school we are doing research on the Human Genome Project and each student has been assigned a chromosome. I was assigned chromosome 1. As part of the project, we have to make a brochure that includes genetic disorders, muations, syndromes, and diseases. I was scrolling through the numerous lists of disease and syndromes and i noticed epidermolysis bullosa, so i clicked on the link that led to it. After reading what EB does, and the many people that it affects that have no treatment, i started crying. I am truly sorry that this has happened. At first when people would ask me if there was one disease in the world that i could cure what would it be, i would reply (like everyone else) cancer. My answer has changed, now when people ask me that, i will reply epidermolysis bullosa. I'm praying for you and I hope that you stay strong. I am planning to have a fundraiser in my neighboorhood and at my parent's work by having a bakesale, or by selling drawings. At first I was going to do what i always do with that money when i do fundraisers, give it to the American Red Cross. I'm not saying that they don't need the money, but I'm now positive that I am going to find a charity that donates the money to EB research.
You have my prayers and my hope, Hannah Angelica Grace Hunter |
| Name: | Chelsea, Nikole and Ashley |
| Comments: | We're doing a project in school on EB and we wanted to let you know that your site was really helpful. Not only was it informative but it showed us a more personal side and how difficult it is to live with EB. We admire the strength and courage of the parents and children who have EB. We had never heard of EB before and we're glad that we are able to spread the awareness to our classmates. Thank you for creating this site, we hope you stay strong. |
| Name: | Joleen Barce |
| E-mail address: | jbarce@polson.net |
| Comments: | I am a 40 year old survivor of EB. When I was born only one doctor in the western US knew what I had been born with. Three of my four children were also born with EB. They also having the mild form that outgrows during adolescence. What doesn't ever leave, however, is the memory of the pain. Emotional and physical. We understand now when one of us scrapes ourselves or have a blister we have compassion when one of us cries. Even though I am older, when I have an occasional blister or over exposure to sun, the pain comes flooding back. Not many people in our life understand. My children and I do though. A few years ago a feature in the Kalispell Daily Interlake printed a story of Lorraine Cameron who came up to Montana during the summer months for her little daughter who couldn't bare the effects of the hot Florida heat on her skin.
Until that article, I hadn't had any awareness or contact of anyone else with EB. It was so emotional to meet her and her little girl and another mother in the area that it was surreal. Until this email I haven't contacted anyone or Lorraine. It has been too difficult and too hard to reach out to others who have my skin condition. My three children who are affected are now 20, 18 and 16 1/2. One characteristic that is very clear as a result of years of suffering, is compassion. Thank you to all of you who have so selflessly contributed to this website. I am beginning to feel drawn more and more to be a part of a community of people who are and have walked a mile in my moccasins ( or better described: socks). Joleen Barce Polson, MT |
| Name: | Charlotte |
| Comments: | I will pray for all victims of EB. It is a truly terrible disease.
Just remember to stay strong becuase you Rock! God loves you so much. Stay strong for him. I will pray for you all when I go to bed at night and pray for your recoverys. Hang in there-YOUR SO SPECIAL. Love Charlotte Age 14 England |
| Name: | Maria Aller |
| E-mail address: | tjmahugg@msn.com |
| Comments: | When I read your dreambook it almost made me cry. I have a two year old and an infant and just imagining not being able to hold them would break my heart. I will pray for you |
| Name: | Christine |
| E-mail address: | christinesimard@hotmail.com |
| Comments: | Since I saw the episode on Extreme Home Makeover with Anthony who had EB, I wanted to find out more about EB and I found this page while surfing around. I cried for 2 hours and was up all nite thinking about it. All I can say is God Bless each and every one of you who has this disorder. That you can even have a smile on your beautiful faces makes me really appreciate all that I have in my life. You are truly amazing! So are the families of these people. God has given you a special job to care for these angels. I wish that I could take some of your pain and make it my own so you would not have to have such a big burden to bear. I will pray for all of you and I really hope that a cure is found. |
| Name: | Tammy Arrowood |
| E-mail address: | tunia@carolina.rr.com |
| Comments: | It would be an honor to sign your guest book because i think you have a beautiful website.
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| Name: | Resie |
| E-mail address: | none |
| Homepage URL: | http none |
| Comments: | Dear EB patients,
I was simpley shocked by the documentary on Jonny Kennedy! What a great human being he was. I never before heard of such a disease. I wish all of you his strenght and kindness, his feeling for humor and his believe in God. |
| Name: | Lizabeth |
| E-mail address: | lizabethmouse@care2.com |
| Comments: | My heart and prayers go out to everyone touched by this condition...I hope there is a cure soon. |
| Name: | Marion |
| Comments: | To everyone who have to deal with this disease,
No language has enough words to describe this suffering, I suppose. So please allow me to speak in Dutch (my own language): Sterkte aan iedereen die met deze afschuwelijke aandoening te maken heeft. Hopelijk is verlichting nabij. Marion, The Netherlands |
| Name: | ona |
| E-mail address: | bertottosteph@aol.com |
| Comments: | hello, j'ai trouver votre site pas mal du tout, mais il faudrais + de mise
à jour, pour qui'il soi excellent ! @+ bertottosteph@aol.com http://mysoundfreud.free.fr/ |
| Name: | Carmen |
| E-mail address: | mcarmen8066@aol.com |
| Comments: | My prayers and thoughts are with you and with all those who suffer from this terrible condition called EB. I too, saw the TLC program on J. Kennedy and my heard goes out to you. I was not aware of this condition and it struck me quite hard. May God continue to give you all strenght and if you ever need someone to write to feel free to do so. |
| Name: | Roberta |
| E-mail address: | biprgk@aol.com |
| Comments: | I worked with someone whose son has EB. He is always in my prayers and I will add all of your children to my prayers as well. I hope for a cure. God bless all of you. |
| Name: | Chris |
| Comments: | Hey,
My son has EB. Take care as I'll take care of him |
| Name: | Dianne Martin |
| E-mail address: | Rubylambchops@aol.com |
| Comments: | You are all in my thoughts and prayers. Nothing said to you by those of us who are not in your situation can really make a difference..but please know that while you may find those that are unfeeling and insensitive..most of the thoughts that strangers you meet are having about you are feelings of terrible sadness at what you have to endure, the wish that we could somehow help and admiration of your courage. I am making a donation. I will never turn away from a chance to advance your cause. Take heart..we do care about you. |
| Name: | Jamie Scheel |
| E-mail address: | jamie@jamiejamiejamie.com |
| Homepage URL: | http://www.jamiejamiejamie.com |
| Comments: | Wow... I wish you all the best. It might seem like life's handed you a dish of the worst, but it's got a strange way of evening itself out (and, in my opinion, giving great big dishes of good to the people who deserve it).
You deserve every good thing life has to offer. |
| Name: | Ayesha Saddique |
| E-mail address: | neebeekee@hotmail.com |
| Comments: | Since I watched the program last night I can't stop thinking about this disease and the people who are affected by it. We are always taught to be grateful because someone else is always worse off than us, but I can't think of a more horrific, painful existence than this. May God Bless all those who are the caretakers of these individuals and may he ease the physical and emotional pain that these people suffer. |
| Name: | C. Hudson |
| E-mail address: | chudson@eisd.net |
| Comments: | I watched the special on TLC about EB and I was compelled to look it up this morning. I can only say I can pray for an answer for the Drs and scientist to find.
I cannot imagine what it is like to have to go through what you all are going through. My prayers are with you. God bless. |