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Adrenoleukodystrophy (ALD) Online Support Group

Carriers


#1

Hi All,

My name is Penny, we have an adult son that was diagnosed withALD after a traumatic brain injury. Actually the brain injury became a blessing, through the many doctors and rehabs he went to, it was recommended that we look into ALD. He had a bone marrow transplant later that year, and has been in rehab since. He has many non-physical issues, and no one knows whether to blame the TBI or the ALD. Cognitive issues are always a battle,m and impulsitivity, seems when he wants something he wants it now. His gait is not perfect, though the longer he is on his feet, the worse it gets, and it seems no matter what when he sits down he sleeps.

While I have had genetic counseling, I have not been tested , the doctors are sure that I am a carrier, Although my age (62) probably prohibits any studies of siblings and relatives. I have a brother who is 60 with no signs of ALD or any cousin of the disease.

I am about to get my first hip replacement in on my left side, and both family doctor and surgeon tell me my right hip is abnormal and my lower back is filled with arthritis as well. I have pain in my left arm too (an have had my heart check again-heart attack 7 years ago with double by pass. Now I am wondering if the ALD/AMN symptoms are showing up and can be part of my problems. I am also have bladder problems. I have two healthy sisters - my older sister has had two knee replacements. Although I know the pains are real, I don't know if I should be correlating the problems to old age or being an ALD carrier. It has been mentioned that I cold be the Alpha carrier. What do you think, should I be tested and what kind of doctor do I see.

Thanks,

P.


#2

I am in the situation as you. My son, 30, was diagnosed about 1 1/2 years ago with ALD and wife (59) is the carrier. They did not recommend a bone marrow transplant since he was to old and to far into the disease. Right now he has no memory, refuses to eat, mood swings and it gets tougher each day as each day he deteriorates more.