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Adrenoleukodystrophy ALD

Sheila

Message 4 of 6 Previous Next



There is only a 50% chance you will have a boy with a defective X making him have the disease or a girl with the defective X making her a carrier. I unfortunately have only two boys. Both have the defective X chromosome. I did not know I was a carrier until less than 3 years ago when my youngest child, then 9 was diagnosed with the childhood form of the disease. My oldest son is now sixteen and has no neurological symptoms but does have Addison's Disease which medication regulates quite well. My advice to you is don't panic. You are so lucky to know you are a carrier before your baby is born. If you have a boy please take him to see Dr. Charles Peters at the University of Minnesota in Minneapolis. He is wonderful. He can watch your boy as he grows and if childhood symptoms occur a bone marrow transplant can be performed and IT DOES WORK. My nine year old son had an advanced form of childhood ALD in October 1997 and was given one year to live. He had a bone marrow transplant and although the disease progressed quite alot for him, it did finally stablize the ALD and saved his life. Dr. Peters will tell you, if the transplant is done in the early stages of the disease a boy can lead a normal life with a successful bone marrow transplant. We went from Tennessee to Minnesota and it was well worth it. Don't go anywhere else! And please don't use Lorenzo's Oil. It does not work. Please don't miss out on having this baby. He may not even have the disease and she won't have it and since you already know about it your chances for success are very good. Best of Luck to you and God Bless!

 


   
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