I am struggling with uncertainty. I want to direct my recently diagnosed friend here but want to make sure people are actively using this page as a resource? Otherwise I think it will make him feel more alone.
My name is Merl from the Ben’s Friends Modsupport Team
I’m sorry to say but our Adrenoleukodystrophy community is very quiet and because for some members their symptoms can very much mimic similar conditions, such as demyelination and polyneuropathy, some have found supports via M.S.
It seems that depending on the age of the patient, their symptom onset and diagnosis can depend on treatment options. There are a few differing types of leukodystrophies, adreno being one, you may find assistance via HOME - United Leukodystrophy Foundation (ulf.org)
Hope it helps
Merl from the Modsupport Team