James E Seifert
Donation protected
I have AMN...please help.
What is AMN?
Adrenomyeloneuropathy (AMN) is a genetic neuro-degenerative disease. It is the adult onset of adrenoleukodystrophy (ALD). In about half of the boys who inherit the mutated ALD gene, symptoms of the disease do not develop until young adulthood, and in general, they progress more slowly. Beginning in their 20's and 30's, these young men exhibit neurological based motor lesions in their extremities. These lesions progress over many years and are inevitably accompanied by moderate to severe handicap. In approximately one third of AMN patients, the central nervous system can also become involved. These AMN patients undergo the same mental and physical deterioration as boys with the childhood form of the disease, adrenoleukodystrophy (ALD). The progression of AMN is slower, with the affected person usually declining to a vegetative state and/or death. There is no effective treatment for AMN; rather, medication and therapies are employed in a palliative manner.
This rare genetic disease took my cousin's life at the age of 34. My cousin's symptoms were more advanced than my own. Thank God my case is not as severe! My condition has worsened over the last couple of years. I have not been able to work for over a year, which has put me and my family in a tough financial situation.
My symptoms include pressure on my optic nerve, effecting my vision; lesions on my brain that effect certain cognitive behaviors; diminishing motor function in my legs, as well as impaired balance, and incontinence.
I have been working with my doctors at Mass General Hospital for the last 2 years to find some help with my condition. What they have determined is that I am in need of a bone marrow transplant! This procedure has proven to slow the progression of the disease, and in some cases has improved the patient's overall condition. This bone marrow transplant is scheduled for early this January. I am a good candidate for this procedure because of my overall good health.
I am asking for help with my living expenses in Boston during my procedure. The procedure itself takes around three to five weeks! After those five weeks I will be discharged from the hospital. Once I am discharged, I need to reside in Boston for close observation. For three to six months I will be away from my children and not earning any income during this whole process.
Anything that you can spare will help me tremendously. Thank you from the bottom of my heart.
What is AMN?
Adrenomyeloneuropathy (AMN) is a genetic neuro-degenerative disease. It is the adult onset of adrenoleukodystrophy (ALD). In about half of the boys who inherit the mutated ALD gene, symptoms of the disease do not develop until young adulthood, and in general, they progress more slowly. Beginning in their 20's and 30's, these young men exhibit neurological based motor lesions in their extremities. These lesions progress over many years and are inevitably accompanied by moderate to severe handicap. In approximately one third of AMN patients, the central nervous system can also become involved. These AMN patients undergo the same mental and physical deterioration as boys with the childhood form of the disease, adrenoleukodystrophy (ALD). The progression of AMN is slower, with the affected person usually declining to a vegetative state and/or death. There is no effective treatment for AMN; rather, medication and therapies are employed in a palliative manner.
This rare genetic disease took my cousin's life at the age of 34. My cousin's symptoms were more advanced than my own. Thank God my case is not as severe! My condition has worsened over the last couple of years. I have not been able to work for over a year, which has put me and my family in a tough financial situation.
My symptoms include pressure on my optic nerve, effecting my vision; lesions on my brain that effect certain cognitive behaviors; diminishing motor function in my legs, as well as impaired balance, and incontinence.
I have been working with my doctors at Mass General Hospital for the last 2 years to find some help with my condition. What they have determined is that I am in need of a bone marrow transplant! This procedure has proven to slow the progression of the disease, and in some cases has improved the patient's overall condition. This bone marrow transplant is scheduled for early this January. I am a good candidate for this procedure because of my overall good health.
I am asking for help with my living expenses in Boston during my procedure. The procedure itself takes around three to five weeks! After those five weeks I will be discharged from the hospital. Once I am discharged, I need to reside in Boston for close observation. For three to six months I will be away from my children and not earning any income during this whole process.
Anything that you can spare will help me tremendously. Thank you from the bottom of my heart.
Organizer
James Seifert
Organizer
Albuquerque, NM