has anyone experenced Wiskott-Aldrich.

my son has wiskott-aldrich syndrome. He is fourteen.

My 5 year old nephew has this disease and has had a bone marrow transplant. My family is looking for an organization that will give financial assistance. This has been a daunting and traumatic experience and I'D like to hear your story.

Hi,

My 12 year old son has Wiskott-Aldrich Syndrome. He has had thrombocytopenia without infections or excema. Doctors call his type of WAS, X-Linked Thrombocytopenia

Hi Sissy,

I saw your posting on the IPOPI website. I have a 12 year old boy with Wiskott-Aldrich Syndrome and wondered if you might like to coorespond.

Rosalind

hi rosalind,
i haven't check this site of awhile. i really gave up on someone posting. i would love to talk with you. email me plumdinni@aol.com i think i emailed you before it would have been a few years ago maybe not i can't remember.

WAS/XLT runds in my family with several male members affected. My son is 10 months old and shows significant thrombcytepenia. HIs medical team questions the presence of full-bown WAS, as there has been only mild eczema (cradle cap) and he's exhibited several upper respiratory infections/colds/fevers. Not sure if more illnesses than any baby at this point in life?? I would LOVE to correspond.

WAS/XLT runds in my family with several male members affected. My son is 10 months old and shows significant thrombcytepenia. HIs medical team questions the presence of full-bown WAS, as there has been only mild eczema (cradle cap) and he's exhibited several upper respiratory infections/colds/fevers. Not sure if more illnesses than any baby at this point in life?? I would LOVE to correspond.

I have a 23 year old son who has WAS. He has immunedificiency, excema and a extremely low platelet count. However the immunoglobulin infusions and other madications are keeping him well. I have a strong family history of this disorder and lost 2 brothers to WAS. My son works full time and lives independently in his own home. He recieves all the support he needs from friends and family and I still do the home infusions with him every 3 weeks. We are very proud of all he has achieved. Please feel free to email me if I can offer any help.

email; carolyn_bickley@msn.com

My seven year old nephew was diagonsed with this disease a year ago. I would like to correspond with you.
Bre

Hello,
My seven year old nephew has been battling this disease since birth. I'd love to hear from you.
Bre

I have a 7 year old nephew with this disease
I would love to hear from you.
Bre

I have a seven year old nephew with this disease and it runs in his mothers family.
She has lost several family members as a result of it. Please let's correspond.
Bre Catherine Carmona wrote:

> WAS/XLT runds in my family with several male members affected.
> My son is 10 months old and shows significant thrombcytepenia.
> HIs medical team questions the presence of full-bown WAS, as
> there has been only mild eczema (cradle cap) and he's exhibited
> several upper respiratory infections/colds/fevers. Not sure if
> more illnesses than any baby at this point in life?? I would
> LOVE to correspond.

Please email me at brestep2001@yahoo.com

Here is something I recently sent out to my friends and family:

The results from David's DNA analysis verified a mutation of the Wiskott-Aldrich Syndrome. To survive, David needs a bone marrow transplant. The next step is for Michael, myself, Adira and Ariella to have a blood draw to see if one of us is a donor match. Bone marrow transplants are risky because the body could reject the new bone marrow. On the flip side, bone marrow transplants from a matching sibling have a very high survival rate. Transplants from parents have a very poor outcome. We pray God provides a match from one of his big sisters. We thank you so much for praying. God has been so good in blessing us with peace! I think we have a long road ahead of us, yet, I am not afraid. I know God loves David and wants the very best for him. I have given his life and health to God. Thanks again for your love and concern. To make it more efficient in sending updates, we created a blog where you can read daily updates about David, see photos, and get the results from upcoming procedures and tests. You can send us words of encouragement too. [davidmcnally.blogspot.com]

I am a 18 year survivor of this disease. I had my transplant when I was 8 years old and just turned 26 the other day. The one thing to look out for if you are going to use a sibling as a donor is to make sure that they do not carry the gene as well. When I had my transplant, my parents originally looked at my older sister. But after some testing, they found out that she carried it. We ended up going with a mis-match donor, my dad. Like I wrote at the begining, I am an 18 year survivor with no side effects to date. I wish you all the best and know that everything will be okay.

Hello everyone, I have been looking for a forum about this disorder because I have it also. Since there are hardly no place for us to talk about this and go to at. I am going to start a website with a forum on it. I will post the link to the site when I make it.

I am 18. I have not had a transplant, I am doing well with sinus infections often and nosebleeds whenever I have the infections, I am on gamagobulin once a month. Umm I am doing well.

My new site is www.wasinfo.cjb.net

Please check it out and leave me a msg in my guestbook. Thanks

Yes my son is 5 and had a bonemarrow transplant.