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

Question: What colour awareness ribbon for Wiskott-Aldrich Syndrome (or generally immunodeficiency syndromes)?

Answer: what do u mean by colour ?

Question: Wiskott - Aldrich Syndrome??? hey, well, I think I have this right, I'm just making sure. Mr. Silvia's sister had a child with Wiskott - Aldrich Syndrome. Mr. Silvia does not have it. Mrs. Silvia has no history of the disorder in her family. WAS is sex linked recessive and so only males have it but females can be carriers. Is it possible for Mr. and Mrs. Silvia to have a child with WAS?

Answer: Yes. Since it is sex linked recessive and females are carriers we know Mr is not contributing. However just because Mrs. doesn't have history of it in her family does not mean she can't be a carrier. Perhaps there is a long line of carrier females. Females are carriers because they have 2 X chromosomes. The abnormal gene since it is recessive does not show up as disease because she has a normal gene on the other X to make up for it. They can have an affected male child. Mr. will give his son a Y chromosome and Mrs will give him the abnormal X. (They could have a normal son if Mrs passed down a normal X)

Question: Do you know about a foundation that provides financial support for a child diagnosed Wiskott-Aldrich Syndrom? A friend's 2 year old cousin was diagnosed with Wiskott-Aldrich Syndrome. His sister will be the bone marrow donor but the procedure, the workup and the clinic's follow up will cost an estimated of $634,000. The hospital has agreed to accept a fee of $60,000 but the parents will still be responsible for all the expenses of the child and mother's stay in New Orleans for 6 months (airfare, visas, food, lodging, transportation, clothing and outpatient medications). Please help this Honduran family!

Answer: The total costs are actually going to be far more than that when you count the min of one year recovery time, and a year full of medicine. I am 2 years from my transplant (mine was for aml, a type of leukemia, but the transplant is the same), and just now getting off all the medications. And then, if there are any complications, the costs will go up as well. Your best option is to start fundraising, hard. Check the Ronald McDonald house for accomadations of the parent. Most transplant hospitals also have a host program, where area families volunteer to be host homes for parents in those situations. Most transplant hospitals also have agreements with some of the area hotels to get parents deeply discounted extended stay rooms. Also, the hospital has social workers that are available to help apply for local programs and things that can help.

Question: All of the following are examples of autoimmune diseases EXCEPT...? a. multiple sclerosis b. Graves disease c. Hashimoto thyroiditis d. myasthenia gravis e. Wiskott-Aldrich syndrome

Answer: I believe that it is either Graves Disease or Hashimoto Thyroiditis. I am 100% sure that it isn't Myasthenia Gravis or Multiple Sclerosis since they don't result from a bacteria/virus.