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- My name is Helen and I live in Ireland with my husband and 2 children. My three year old son Peter has an XLT mutation of WAS. He was diagnosed at birth with low platelets and the WAS diagnosis was confirmed almost 5 months later. Peter thankfully is in very good health but does have very low platelets generally between 12-30k. Thankfully we have not had any bleeding incidents although Peter has a lot of bruising most of the time. Peter does not have eczema or any problems so far with immune deficiency. My Dad also has WAS, he is 66 years old! He is in very good health. He did have a splenectomy when he was 30 but didn't know then he had WAS, he thought he had ITP. He is on prophylactic antibiotics for the last 2 years no IVIG. Thankfully he has not had any events of sepsis. Dad has a younger brother who is 58 also with WAS he has not had a splenectomy and he is generally well also. I have 2 cousins with WAS one who had a splenectomy at age 2 1/2 and unfortunately developed meningitis a year later and is hearing impaired as a result. He is now 29 years old and is very healthy no eczema or immune funtion problems. My other cousin has had no interventions but has survived a major car crash. He does get a lot of infections and has developed eczema in the last couple of years, he is 35 years old.
- BMT is not a treatment option for Peter at the moment we will continue to monitor his health and be vigilant to his need for extra protection. I hope that his health is similar to his Grand dad's and that Peter's XLT mutation will continue to manifest itself as mild.
- If you wish to contact us you can do so through the forum.