This is really difficult and a crazy place maybe to post this question, however there is a big question mark in my life and because of the rarity of ALD/AMN I am thinking someone here may be able to help me. I was born in So Ca (Orange County) in 1969 and was adopted at birth (still wondering who bio dad is…I am sure he has AMN) any thoughts???? He had a steel plate in his shoulder from an accident. He and would have been born sometime from 1950-1952 was around 6’2" tall and 180 lbs at the time of my birth. That is all the information I have about him I am Mom to 4 amazing kiddos….3 on earth and 1 in heaven. He was the oldest. He passed in 2000 due to ALD. The other 3 are girls…one is a carrier she had our first grandchild in December, a boy.The next daughter isn’t a carrier and the last is unknown…Dr Raymond said he wouldn’t check her until she was child bearing years. (if I base it on personality and disposition my guess is yes) If there is anyone who might have information or who may know someone who fits this profile any knowledge would be greatly appreciated. I have children who constantly ask me “why we don’t know who he is?” and why my bio-mom won’t tell (I found her in 1992)

Jicams, I am sorry about your son. This disease can be fatal to young boys. Your daughters are a different topic. I would have them all tested as they oget lder. My daughters do not want to be tested. My children, 30 and 25 showed no interest in being tested. If you are considering having children, you need to know if you are positive for AMN. If so, they have to do invitro fertilization for you to have a normal child. The long term affects of AMN are not so severe for girls. My mom had AMN, and this did not affect her adversly. She raised four young boys from young ages to adult-hood. She had indefatigable energy. She never tired. She was fun to be with, had a great sense of humor. Mom lived fifty years without father, a great general surgeon who died from pancreatic cancer at age 39. I would talk to others on this board, or consult your Dr. and see if he knows of any support groups. Don't let the illness scare you. Knowledge is always better than ignorance. God bless you. Mark.

Thank you Mark for your input. For sure have had my experience .with ALD and have also been dxed with AMN .You are 100% correct that knowledge is power. It is interesting to see how things change in the way this is looked at as time goes on. ...Personally my biggest complaint is intense back pain and spasms. ..I can't stand or sit to long. .. too much of either is unbearable. Other than that the main reason for my post was to see if I may be able to find some one who may have info about my bio father of whom I gave hmm on identifying information about above. Many blessings to you as well! Jeanine