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| E-mail address: | scottishlady_2000-@excite.co.uk |
| Comments: | Hey John
rememer me Laura (scottish) was doing a search on NF and came across your webpage My NF caused me learning problems at school to and now trying to get a job I sometimes see your nam e pop up in messenger |
| Name: | Laura |
| E-mail address: | bigmom1961@aol.com |
| Comments: | my name is helen and i live in the usa. i also have n f 1 got it from my father. hope we can email each other. |
| Name: | helen |
| E-mail address: | carole-anne@eppingelec.co.uk |
| Comments: | Hi John
Im jo's little sister - sorry to read your story - but equally glad to see that you are coping somewhat - if that makes sense. would love to chat about years gone by - you have my email now would be nice to catch up - will pass on your details to joe if he ever answers his phone lol. xx |
| Name: | Carole-Anne@eppingelec.co.uk |
| E-mail address: | jacquierogers@gmail.com |
| Homepage URL: | http://www.jacquierogers.com |
| Comments: | John, what a wonderful job you did with your freewebs page, and thanks for you hard work with spreading awareness for Neurofibromatosis. You're awesome!
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| Name: | Jacquie Rogers, author of Faery Special Romances |
| E-mail address: | marmiteluver@btinternet.com |
| Comments: | hi my name is nicki i've just hit the big 40 i was diagnosed with nf at the age of 5 when a tumor was removed from my back i am now covered with tumors mainly on my trunk, face and neck i have 2 children 1 of 14 who at the moment shows no signs of nf and the other is only 8 im not very good at going to the hospital and only attend when i think i need surgery.my last op was in 2000 when a tumor on my brain caused paralysis on my left side i spent 8 weeks in hospital which was very hard as the day i was admitted my youngest son turned 12 weeks does anyone know if my children can have a simple test to see if they have the condition. i would love to be able to chat to other sufferers so please feel free to e mail me nicki |
| Name: | nicki |
| E-mail address: | reggie@reggiebibbs.com |
| Homepage URL: | http://www.reggiebibbs.com |
| Comments: | Thank you for sharing your story. We need to support one another. Don't stop what you are doing. Please feel free to write or email anytime. I will visit your site often. |
| Name: | Reggie |
| E-mail address: | leoenwilna@versatel.nl |
| Homepage URL: | http://leoenwilna.mijnvrouw.nl |
| Comments: | Hi John, we just read you page and it is quite a story!
We are Wilna and Leo and we try to 'collect' international people with NF to build a kind of international Community for people with NF and those who are involved. Our goal / aim is to create a nice international chat between people with NF all over the world. We find your story so impressive that we would like to ask you if we can put your story on our site. Of course you are very welcome to visit our sites, i will out the links here. With kind regards, Wilna and Leo, Arnhem, the Netherlands. http://groups.msn.com/NFWorld-Wide (Our Internationale MSN - Site for people with NF) http://health.groups.yahoo.com/group/NFEmaillcirkle/ ( International YAhoo - group for people with NF) |
| Name: | Wilna en Leo Velthuis |
| E-mail address: | knistle@yahoo.com |
| Comments: | i was touch to read about your story because i ponder we have a similar experience, but i think i still have long way to go. my journey to my nf is still a challenge to me. iam trully inspired of your story and now i know iam not alone with this problem that i have. i was diagnose with nf when i was 10 years old and also had undergone several operation. the lump started on my legs above the knee and now i have a reoccurance on my right foot. i have a huge tumor on my plantar area and it is hurting me so bad that i want it to be amputated. unluckly iam still struggling for financial aid for my my next surgery. but i don't loose hope. i know god will provide the rest.
anyway iam now 32 years old. although i'm suffering with nf just like you, i strive to leave a normal life. i was just surfing the net and was able to read your story. it was actually unintentional, maybe in time of my desperation god want to show me that i'm not alone with this illness and i have to continue to leave a meaningfull life and same as you inspire other people suffering from nf. |
| Name: | knis |
| E-mail address: | missbanana1992@yahoo.com |
| Comments: | Hi john,
My name is Anna and i have NF1 I had it since i was a baby I went thru alot and had some learning problems. I have bumps all over my body as well and i get depressed at times. I am the only one of 7 in my fam that have it and I am the only one who has it on both sides of my fam. It was hard growing up having this condition but thats the past. I went to college I have my phlebotomy license {drawing blood} and the funny thing is my teacher has nf1 as well she told me she over came it and she is RN and teaches more health stuff at the school I went to. I just got married 19,2007 I thought I never see this day come because of my condition but I found someone who loves me for me and says I am beautiful. We are all BEAUTIFUL people. no one is perfect. please email me if anyone wants to I would be happy to talk to people who have nf1. |
| Name: | Anna Floyd |
| E-mail address: | cathy_d132@hotmail.co.uk |
| Comments: | Hi John just read your web site i found it very informative. i work with adults with learning difficulties and special needs in a day centre i hav,nt come across any suffers of NF as yet and must admit i knew nothing about it. I would like to thank you so much for your story i can see that your story has encouraged many people I admire you for that many thanks Cathy |
| Name: | Cathy dalby |
| E-mail address: | leany17@gmail.com |
| Homepage URL: | http://profile.myspace.com/index.cfm?fuseaction=user.viewprofile&friendID=102508866 |
| Comments: | Hi, I too have NF1. Have been living with this for the past 35 years after being diagnosed when I was 12. I have been fairly lucky compared to yourself and others. I am covered all over with lumps of various sizes, but only have endured minor surgeries to remove those that have been in the way or grown too large. I struggled at school and suffer depression these days, but try to keep on top on most things. Both my children have NF1 but i was the only one of six siblings in my family to have it. I keep you in my prayers. Thanks for your page. Hope you do some further updates so we can see how you are doing! |
| Name: | Leanne |
| E-mail address: | SCOTTNGINAX5@AOL.COM |
| Comments: | Lovely dreambook John ,you are a true hero among men and women who suffer and wait for a cure !! My husband was diagnosed with Nf1 right around puberty, he is now 41. He has tumors of different sizes that cover his entire body including his face which from what i have read is not very common. He too struggled with learning disabilities his entire life and concentration is his nemesis. We are currently trying to find out if any other NF1 sufferers have experienced episodes of "spacing out" or moments of "blacking out" without losing conciousness? We have had him tested for seizures and he was on seizure meds but there was no releif in these symptoms what so ever. Best of luck to you John . We will keep you in our thoughts and our prayers.. God bless |
| Name: | scott , gina, and family Minooka, IIL U.S.A |
| E-mail address: | littlebearnf1@ntlworld.com |
| Comments: | hi iam noreen iam 32 years old i have nf1 tumors all over my body have some learning problems i go to a day centre three days a week no one else in family has it so i just love talking to others with nf it easy to talk to others i live at home with my mummy and brother and my dog so any one can email me pleas feel free my yahoo id is becksnoreen'YAHOO.CO.UK MY MSN ID IS NOREENNF129@HOTMAIL.COM THANKYOU |
| Name: | NOREEN STEENSON |
| E-mail address: | rtomo@optonline.net |
| Comments: | Hi John,
This is HAWK53 from Chess World. As a polio survivor myself, I empathize with you and know that in simple terms "what doesn't kill you makes you stronger" ........ You and I are as strong as they come. Keep on rollin' !!!!! Ron |
| Name: | Ronald A. Tomo |
| Comments: | im 16 i have NF1, im from canada... i dont know very many people with NF ( just my family) and i would like to know people from canada that have NF... |
| Name: | Jess |
| E-mail address: | scots_lass732000@yahoo.co.uk |
| Comments: | hi my name is jackie, im 33 and have NF1, i have 2 kids neither off them have NF, i would love to hear from people with NF, im from edinburgh scotland |
| Name: | jackie |
| E-mail address: | x-flame@gudron.com |
| Homepage URL: | http://fur-mukluks-rabbit.gudron.com |
| Comments: | Very good site! I like it!
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| Name: | x-flame |
| E-mail address: | nchoi@fsmail.net |
| Comments: | I am 24 and have nf. I was diagnosed as a baby and have many tumors all over my body. I have a two year old daughter who also has nf. Nobody else in my family suffers from the condition and I would love to meet other people in the U.K who have nf. |
| Name: | Nancy |
| Comments: | :( |
| Name: | tim |
| E-mail address: | kungfudragon1187@aol.com |
| Comments: | Hello my name is laura and i live in the uk, i have Nf1 i was diagnosed with nf when i was 16 months old for sevral years I have had verious operations to straighten and strengthen my left leg. I have had eight elizoroth fixators (excuase my terrible spelling) I am now 17 and for the first time ever have not had an operation for a whole year! I know in the future I will have more operations but my leg is in a much greater condition and I can walk and run so for now im am very greatful to my doctors! I have had neurofibrones removed and am hoping I wont see to much more of them! I dont let Nf stop me and regualy attened kungfu classes! I volunteer to talk about Nf other people who come my hospital with Nf, I have seen far worse cases of nf then me and am very greatful that Im not worse off and am thankful to the people who helped me through! I still have a long road ahead. |
| Name: | Laura |
| E-mail address: | viks@postpals.co.uk |
| Homepage URL: | http://www.postpals.co.uk |
| Comments: | Hope despite everything your soon feeling
Love Viks |
| Name: | viks |
| E-mail address: | Info@limada.com |
| Homepage URL: | http://www.limada.com/Ziekte_Von_Recklinghausen/index.html |
| Comments: | Hi John, I have myself also NF. I have made a Dutch page your left stand ookbij. |
| Name: | mario |
| E-mail address: | lisya@mail.com |
| Homepage URL: | http://www.lisya.com |
| Comments: | Awesome site! I love the layout! |
| Name: | Lisya |
| Comments: | i just wnated you to know that I think you are a good chessplayer. |
| Name: | Theresa |
| E-mail address: | sandeep_taneja2@yahoo.com |
| Comments: | Really Good!!! |
| Name: | Porn.Womir.Com |
| E-mail address: | the_sinclairs1@msn.com |
| Comments: | What a story!! I'm glad to see that you hold your head high and don't let this get you down. I have NF1 with plexaform. I have had many operations to remove the tumors remove but as of now no limbs removed.Last March I had to have two tumors removed from my spine (L2 & L4-L5)and at the L2 they had to take the nerve root which left part of my left leg numb. I have been told that due to the tumors that there is a chance down the road I could have to have my left leg taken mid thigh. I have left my life in the hands of God. He has a plan for me and how ever He sees my life to be that is what I will do. Thank you for your story and my God bless you. |
| Name: | Ben Sinclair |
| E-mail address: | the_sinclairs1@msn.com |
| Comments: | What a story!! I'm glad to see tha you you hold your head high and don't let this get you down. I have NF1 with plexaform. I have had many operations to remove the tumors remove but as of now no limbs removed.Last March I had to have two tumors removed from my spine (L2 & L4-L5)and at the L2 they had to take the nerve root which left part of my left leg numb. I have been told that due to the tumors that there is a chance down the road I could have to have my left leg taken mid thigh. I have left my life in the hands of God. He has a plan for me and how ever He sees my life to be that is what I will do. Thank you for your story and my God bless you. |
| Name: | Ben Sinclair |
| E-mail address: | smudge@inthekitchen92.fsnet.co.uk |
| Comments: | My daughter bethan has NF1 she is 6yrs old and reading your story inspirses me to give bethan all the love and support i know she is going to need as she gets older. thank you wendy. |
| Name: | wnedy hook |
| E-mail address: | ANDREWEASTON_1@hotmail.com |
| Comments: | You are not just an inspiration to sufferers of NF but an
inspiration to all . |
| Name: | Andrew Easton |
| E-mail address: | fennel@maximumedge.com |
| Homepage URL: | http://www.hostultra.com/~appellcore/index.html |
| Comments: | You seem to not let your disability get the better of you and I greatly admire you for that.
My site is DisABILITIES Information. Please see URL. Thanks |
| Name: | Lynda Appell |
| E-mail address: | bran@vodafone.ie |
| Comments: | Congratulations,you seem to have achieved,despite your handicap. If we all could keep our courage as you did ,why, the World would be a better place...padraic |
| Name: | Padraic(crosta) |
| E-mail address: | lawnjaw@losch.net |
| Homepage URL: | http://www.heartwarmers4u.com/members?angeleyes4u |
| Comments: | I ALSO HAVE NF |
| Name: | Lori |
| E-mail address: | bigmom1961@aol.com |
| Comments: | you have a very beauitful story. and i wish you all the luck in thw world. i have nf 1 i was born with it. i live in new jersey. my left arm has a tumor that grew has part of a muscle and the arm is crook.my name is helen if you would like to chat. |
| Name: | Helen |
| E-mail address: | f.boyermadrieres@laposte.net |
| Homepage URL: | http://www.francisnf.fr.st |
| Comments: | Dear Friend
Congratulation for your very interesting site.I wish you to receive lot of visitors.My dream is thanks to the web creating the most wonderful friendship in the world kind regards francis "naughty little toad" |
| Name: | boyer-Madrieres |
| E-mail address: | buffy@rootham2039.freeserve.co.uk |
| Comments: | hi i have nf1 i'm 15 and i was diognosed at the age of 6 |
| Name: | kellie |
| E-mail address: | shywlf@webtv.net |
| Comments: | I was diagnosed with NF almost a year ago,
recently i found out that i passed it onto my daughter,luckily my son was spared,i commend you for reaching out to people to help them better understand this diease.I hope all is well and stays well. |
| Name: | Emily Greenberg |
| Comments: | sorry about your sitatration but i understand some of it because i have it to. |
| Name: | GL |
| E-mail address: | Margaret McNicol@AOL.COM |
| Comments: | Hi John,
Congratulations on you web site,think it is great and I think you are truly a couragous person who has undoubtly gave reassurance to pleny of others with the condition. Proud to know you and please keep up the good work. YOUR A STAR JOHN |
| Name: | Love Margaret (DAVIS) |
| E-mail address: | laura.godbold@teleralgrp.com |
| Comments: | hi,i have nf1 & inherited nf from my dad i am partically sighterd as one of the tumors is in my head nr my left eye they cant do nothing with that - its too risky- or so i have been told - i have had other lumps removed on external parts of my body- i just dont think enought people understand enough about the condition.however there are alot of other people who are worse off than me - so i try and count my blessings- good luck |
| Name: | laura |
| E-mail address: | bevbell74@yahoo.co.uk |
| Comments: | thank you for all that info it has been very good |
| Name: | beverley bell |
| E-mail address: | lawnjaw@losch.net |
| Comments: | hello there my name is lori i also have nf i remember as achild haveing pains doctors said it was nothing still i seemed to be getting worse and yet to be told it was nothing i was in my early twenties and a doctor told me i had tuomors thats all he said so as time went on and the pain cont to get worseand put my foot down and said thats it i need a doctor who can help me that was present im 31 well one doctor did say it was nf so now i found the right doctors i now know that i have nf and hope one day there can be a cure i have 3 sisters and 1 brother none are affected by havein nf but an uncle a some cousins do have it |
| Name: | lori |
| E-mail address: | ang5158@msn.com |
| Comments: | Hi,I just read your story,my husband & oldest daughter who is 22 yrs old also have nf. She has a 3 yr old,& a 2 mo old. Yes there is alway's a worry,the slighest ache or pain, & the first thing i worry about is,is there another tumor starting.My youngest daughter has only 2 1/2 cafe spot's.She is nf free so far,she's 20 yrs old & has a 2 yr old and pregnant again.We watch the grandkid's all the time for any sign's.You get used to the stare's from people,because most of them have never heard of nf.So may GOD be with you & your family. |
| Name: | ang |
| E-mail address: | wilkoandco@bushinternet.com |
| Comments: | thank you for yur story. |
| Name: | joy wilkins |
| E-mail address: | akkerney2@yahoo.com |
| Comments: | hi, how are you? i have a 10 year old daughter that has nf1. we found out when she was 7mos. old. it has been very hard to deal with. she has alot of cafe-au-lait spots,one large plexiform neurofibroma on her neck & back. in the last few weeks she has complained that here back has been hurting all the way down her spine. the dr. has done alot of test and found she has some wideing in the c4,c5,c6 and diformaties on t1 & t7 and some lessions. i worry alot and afraid to let her do much until we find out more whats wrong. we haven't told her much about nf we don't want here to worry. and again good job on web page. god bless you |
| Name: | bonnie |
| E-mail address: | nfmissy100@yahoo.com |
| Homepage URL: | http://home.talkcity.com/fraternityrow/missy100mary |
| Comments: | great homepage. I know you from the nf.org chatroom.It's been a pleasure chatting with you, and I look forward to many more.
|
| Name: | Mary (missy100) |
| E-mail address: | kim_mepa@yahoo.com |
| Homepage URL: | http://ww.angelfire.com/pa2/kimccarl |
| Comments: | Hi we met in the NF.org chat ..Hope to see ya thee again , .This is a Nice page and thanks for sharing it. |
| Name: | Kim |
| E-mail address: | WELLCOMEBREAK@AOL.COM |
| Comments: | I JUST READ YOUR WEB SITE,I TOO HAVE THE "DISEASE"AND IT EFFECTS ME BADLY TOO.
MY TUMOUR HAS BEEN ON MY EYE LID AND IVE HAD 7 OPERATIONS TO REMOVE IT PLUS LOADS OF OTHER SCARS ALL OVER MY BODY LEFT FROM REMOVING LOADS OF LUMPS. I THOUGHT I WAS THE ONLY ONE WITH THE ILLNESS ITS NICE TO KNOW THAT THERE ARE AT LEAST 19,000 WEB SITES THAT SEEM TO BE LOOKING FOR A CURE MAYBE YOU AND ME MITE BE IN TIME FOR A CURE? |
| Name: | PAUL |
| E-mail address: | e_naas6@hotmail.com |
| Homepage URL: | http://www.geocities.com/elinnaas/nf.html |
| Comments: | u have a nice homepage john.
and this dreambook was a great idea. i have a guestbook. hope u will visit my homepage.... great to talk to u in the chat room.. |
| Name: | Elin |
| E-mail address: | patches@cox-internet.com |
| Comments: | Thank you for putting your story out for everyone to read.
You really are an inspiration to all of us who have NF, and to everyone who has ever had to lose a limp. I am glad we had a chance to meet in the chat room. May we meet again. |
| Name: | Elizabeth aka 2001patches |
| E-mail address: | jaharter@swbell.net |
| Comments: | I'm encouraged by your story. I guess I feel sorry for
myself at times. I don't mean to, but I wonder why me. I have had several tumors removed but no amputies. I guess I'm lucky. I do have the spots and tumors. Lots of them and yes the older I get the more I get and the bigger they grow.I'm really sorry for what you have gone through and pray that someday there will be a cure for NF. I hope that others will read your story and have faith like you did to go on with life, because life still goes on. Take care of yourself and God Bless You. |
| Name: | Joy |