Are there any good treatments that will prolong the death
Adult ale treatments: Are there any... - Leukodystrophy Su...
Leukodystrophy Support
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Adult ale treatments
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ilovelarry
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Hello ilovelarry,
Thanks for posting your question.
However, I will be unable to help you with your enquiry until I have further details such as the patients' age, symptoms, diagnosis, current treatments.
I am really sorry for not being able to help you any further at this stage. But, it would be really useful if you could provide us with further details.
Meanwhile, it could be really helpful if you'd read through our practical information leaflets (aldlife.org/patient-informa... and route map (ald-amn.info).
Thanks for getting in touch.
he is 22 years old they r saying that he has ald the sever kind he cant walk slurred speech sever shacking in hands and arms no controll of his arms troble hearing and seeing he is going down quick i am reading about the mylin project can that trial; help my husband
Hello ilovelarry,
Thanks for getting back in touch. I am really sorry for the delay in getting back to you.
I would advise that you join our mailing list so we can send you information including an opportunity to get in contact with other people in similar circumstances. I would be more than happy to add you to our mailing list, if you could please send us your email address. You can get in contact with us via email - info@aldlife.org.
However, from your response, the symptoms may be at an advanced stage and there are currently no treatment available. Perhaps, it would be helpful if you could send me details of your location, so we can help you to get in touch with a specialist.
Though, there has been some work done on bone marrow transplant for adults, but unfortunately as with young boys, once symptoms reach an advanced stage it becomes less likely to help, particularly because it is a severe form of treatment.
.
I hope that from the blood test results - it isn't as advanced as it seems.
Thanks again for getting in touch.
in reply to
Hello ilovelarry,
Thanks for getting in touch earlier. I am really glad to see that you have got involved in our HealthUnlocked community.
However, it may be helpful if you'd get in contact with the 'United Leukodystrophy Foundation' or the 'Stop ALD Foundation' - who are based locally in the US and maybe able to help you further.
If you have any other queries, please do not hesitate to get back in touch, or alternatively email us at info@aldlife.org.
Kind Regards.
ALD Life
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