I found out that I inharited a deadly genetic condition from my father when i got pregnant. My mom waited untill i was 5 months pregnanat with my son to tell me that my son had a 50/50 chance of inhariting a condition called Adrenoleukodystrophy. I is so rare that 1 out of every 17,900 boys nation wide have it. My son is one of them. He gets treatment through Kennidy Kreiger Hospital. But, i can not find someone willing to explore the health problems I have. We have proven that I am a carrier and have symptoms of long term chronic pain, weakness and stiffness in legs and arms, migrains, and much more. I no longer sleep through the night because of my pain. I just don't know where else to look for help. The doctors don't know how to help me. I am the only person left in my family that has this condition other then my son.
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Hi! i have two sons with ALD and the doctor says i am a carrier since i have 2 kids affected. My eldest who is bedridden for more than two years and my 2nd is on MRI monitoring every 6 mos. I Am afraid when symptoms occur with me.
March 25, 2017 - 4:46pmThis Comment
I am also a carrier of ALD. My brother died at 9 years old and my mother did not know that she was a carrier of ALD until after my brother got sick. My husband and I found out that I was pregnant this past January and it was a boy so we had to abort. It was sooooo hard! We are going to try the IVF thing next!
November 27, 2014 - 8:38pmThis Comment
Monica,
April 29, 2014 - 11:15pmI have a word of advice for your son. Please don't make the mistake of not doing an MRI if u haven't already I was unaware my son had the rare disease at all till he stopped"listening" to me. I wish I would have known sooner cause of the behavioral problems after asking three docs to just do an MRI to help me feel better that something wasn't blocking stuff to cause heading problems, half his brain was dead already. It attacked quickly & aggressively & even had to bite doctors heads off to get an emergency bone marrow transplant done. I am still having to tell docs how to do their jobs to get things done for him. His bone marrow transplant was over a year ago, he no longer hears at all, trouble seeing & can't walk.he was always normal till the hearing thing, & nobody noticed out, only after I did around the corner tests offering cookies, & him not moving at all. Please b sure sure is all I'm saying. I'm broke down physically badly the past year caring for him alone, & no help but from one best friend I would've wish my life on my worst enemy.
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I too am a carrier of ALD. My sisters and I are all having problems. We are currently taking baclofen for legs spasms. It helps with the spasms, but for me not the pain. Although it does for my younger sister. I hurt in my hips and back and like you, I toss and turn at night because of the pain. I completely understand how you feel. I lost my son in August 2008 to this disease, he was 25. He was 7 when found out that he had it. I wish there was something that I could tell you. But you are already doing everything thing that I know to do. I pray that they will find a cure for this disease soon. I wish you and your son all the best.
July 2, 2010 - 2:34pmSarah Robbins
Delhi, LA
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Hey monica I see this is very old but I was wondering how things have been going so far? Are things better? I hope!
April 27, 2010 - 8:25pmThis Comment
I help manage a community of people dealing with ALD. Visit the web site if you feel like you could use some support. http://www.aldsupport.org
August 22, 2009 - 8:16pmThis Comment
I am stuck in a Bind and maybe you of you can help me. My son have visits with his dad on the weekends. His dad has been neglecting my sons needs and leaving it up to his new wwife to care for all of my sons needs while he is there. I have been slowly finding out things like not fallowing his diet that is medically needed. He bring him home early because he can not handle him. 2 weekends ago he never showed to pick him up because i told him i was taking him back to court, didnt say anything about him not fallowing his court order. So i brought him there and dropped him off. I then told him that, He was not going to have visits anymore untill he has an active phone that I can contact him on if there is an emergancy. So he never showed to pick him up. I did not bring him there. I am not going to force him to take him for visits that he does not want. I need help with this. I feel I need to find my son an advocate. Someone that can help me make that right choices for him. Is father doesnt want to be, obviously. I need to make up my mind. Go to court, revoke all visits, or let it go and hope he will ask to see him again. I need to think of my sons safty. He is slowly killing my son and i dont know how to help. If I take away my sons visits, will he hate me for taking him away from dad, and if I dont will his father kill him feeding him foods that over time will lead to brain damage and even worst, death. I am going to file with the court, but I am still unsure how to deal with this.I want to do what is best for my son. With his condition and diet restrictions I want o do what is right for him.
August 15, 2009 - 1:38pmThis Comment
He is on the Lorenzo's oil study, But that is no garentee that it will work. It is not that easy. there is more to it then just taking the medication. That is the problem. No-one understands the restrictions this disorder brings with it. It sucks.
August 14, 2009 - 5:16pmThis Comment
Recently I watched a film called Lorenzos Oil in which a boy suffers from ALD which was based on a true story. His parents never gave up hope and researched a treatment for ALD sufferers. After many years of research they created an oil called 'Lorenzos Oil' named after their son. By taking this oil Lorenzo lived until he was 30. Other kids have been taking 'Lorenzos Oil' and they can now live a normal life. Maybe give 'Lorenzos Oil' a try.
August 12, 2009 - 4:18pmThis Comment
I have my doubts that the oil is the factor that made it possible for him to reach the age or 30. There are other patients (with the childhood phenotype of ALD) that have lived almost as long thanks to 24/7 high quality medical care.
The movies idealises the Lorenzo's Oil diet and 'its effectiveness. The Odone's did however revolutionize our understanding of the disease and how it works. And gave us the treatment that seems to actually work in some cases. Cases where it seems to work are children that don't have neurological symptoms before they are on the diet. There's still a lot of discussion in the medical community in how far it is effective. However, I wouldn't recommend taking children of the diet when they aren't suffering from possible side effects of the diet (in rare cases).
August 16, 2009 - 3:32amThis Comment