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Wiskott Aldrich Syndrome

Get the facts on Wiskott Aldrich Syndrome treatment, diagnosis, staging, causes, types, symptoms. Information and current news about clinical trials and trial-related data, Wiskott Aldrich Syndrome prevention, screening, research, statistics and other Wiskott Aldrich Syndrome related topics. We answer all your qestions about Wiskott Aldrich Syndrome.

Question: Does anyone here know of anyone or any cases of people with Wiskott Aldrich syndrome? Just wanting any personal experiences as my nephews almost certainly have it and we are just waiting for test results to come back. They are likely to have to have bone marrow transplants in the next year. Trying to stay positive about it though, but BMT sounds like the most successful outcome for them. It is a very rare disorder so it is probably a long shot that anyone on here will know of anyone personally who has this, but would love to hear from you. Thanks. You seem to know alot. They both have the skin rash and ecsema, also. My sister sees a nutritionist and they're are alot of foods that she avoids to help control the this.

Answer: Yes, I knew one person that had this disease. He was a friend of mine as a child. He always had to watch out for anything that would cause him to bleed. This disease is rare and statistically showing up in males only. About 4 in one million get this problem. The WAS gene is a defect in the "X" chromosome. Since girls get two, if the second "X" is normal, it compensates for the defective one and the disease doesn't happen, although they are now a carrier. It's interesting to note that even if you have a genetic defect, many times you can suppress the expression of a gene or cause the expression with nutrition or environment. The bone marrow transplant is an excellent way to try and alter what is happening, but I would also look at the nutritional approach as well. Since the spleen responds to cell metabolism issues, I would think that if you increase the activity of the adrenal glands with herbs, you could help the spleen deal with it's duties a lot better. This would also help the skin rash that typically is associated with this disease. I would focus on making him as healthy as possible with good nutrition and pray that the bone marrow transplants may give him a second lease on a normal life. good luck to you

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