Wow that is amazing! My son is 5 and had to have a bone marrow transplant because he had full blow WAS. I have only met one person with boys who had this horribl syndrome. Please email me.

my grandson is 13 weeks old and has been ill since birth. We thought he has Langerhans Cell Histiocytosis at first (symptoms very similar) but various biopsys confirmed it wasnt now we are waiting for conformation of diagnosis of wiskott-aldrich syndrome. We are awaiting a bone marrow donor unfortunatly my grandson is an only child. can anyone out there give me some hope or tell me that there is a light at the end of this horrific tunnel.

Hello,

I have a 3 1/2 years old with WAS and a 6 month old son who will be tested in the near future for WAS. Would love to hear from anyone who has a loved one with was.

Hi Catherine, I have a son who has XLT. He is now 7 years old and I would love to hear from you.

Sumathi

Hi Bre,

My son was born with WAS and has had a transplant and I'm pregnant and going through the testing period now any info that you have and know on risks would be great.

Thanks

Hi,

My son was born with W.A.S and has had a transplant. I'm pregnant and would love to know if you have any more children and if they have been affected by the gene.

Thanks

Hi Carolyn Bickley,

My Son is 4 and was born with Wiskott and had a transplant I'm now pregnant and was hoping you might be able to give me some info on chances on having another baby with Wiskott as my doctor here in NSW Australia don't seem to know anything as my son was the first child Transplant here from what I know.

Thank you

Hi Carolyn Bickley,

My Son is 4 and was born with Wiskott and had a transplant I'm now pregnant and was hoping you might be able to give me some info on chances on having another baby with Wiskott as my doctor here in NSW Australia don't seem to know anything as my son was the first child Transplant here from what I know.

Thank you my email address is susan.rugless@bigpond.com

Hello my son was diagnosed with wiskott aldrich syndrome and had a transplant about 7 months ago. I am just looking to talk to someone else who has gone through this bad disease feel free to e-mail me at jamesmom85@yahoo.com

thank you samantha

Hi Sissy,
My 13 year old son has been diagnosed with WAS yesterday - he has been misdiagnosed with ITP since he was 5 months old, had his spleen removed at 5yo, and has had all the infection and skin problems as well as low platlets all his life. We are a bit numb about it all at the moment and have only been given vague advice re need to look at transplant possibility etc. I have read some information abut the sucess of these being much lower as they get older (and am now raging against the machine of why he wasn't correctly diagnosed as a baby!). Thought it might be good to talk to someone else with a teenager with this. We are in Brisbane Australia.
Sue

Hello,
Saw your posting and am thrilled to find someone else in Australia to talk to. My son has been sick since he was 5 months old and was diagnosed as having ITP and eventually had a spleenectomy at age 5. He is now 13 years old and on Thursday we got a definitve diagnosis of WAS. Unfortunately he has missed the best window for transplant and I must say I don't feel vry informed by either of the two specialists who met with us to confirm the diagnosis. Did you find any really informed Drs? Were you given other treatment options than transplant? How is your son now (and I see you were pregnant, have you had the baby and how are they?) Hope you don't mind me writing but I feel very alone here so would love someone semi-local to talk to.
Thanks,
Sue