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Adrenoleukodystrophy (ALD) Online Support Group

Hi, I’m new

Hi, I’m Nikki. My husband has ALD & I was just wondering if anyone else has a husband going through this?
Thank you

Hey Nikki,
Welcome to Ben’s Friends.
ALD is more prevalent in males, so it is more likely that you’ll find another husband with this condition. There are 3 differing forms of ALD and it can depend on when your husband was diagnosed to what sorts of treatment options maybe available to manage the condition and it’s various symptoms. The condition damages the myelin sheath around the nerves. The myelin sheath acts as an insulator around the nerve fibre so that the electrical signal gets to the appropriate area. Damage to the sheath can cause the electrical signal to short circuit causing any number of effects. There are a few conditions involving damage or progressive deterioration of the myelin sheath, Multiple Sclerosis (M.S.) being one of the more common conditions. You may find accessing M.S. information/resources could be of assistance too.

Hope it helps
Merl from the Moderator Support Team

thank you for the extra information, we know most of ALD complications as Daniel goes to London hospital every 6 months at the moment. I really need someone knows the husband aspect. I feel so lonely just because the Dan I’ve been in love with has been slowly drifting away. He has ALD & AMN with brain involvement or cerebral ALD.
Thank you
Nikki

Hi Nikki, l truly understand. I am dealing with my son who is 31 and was diagnosed at 27 but the disorder started when he was a sophomore in college on an engineering scholarship. He is on hospice care at home but it is tough. Veronica

I’m so sorry Veronica, it’s such a terrible condition. Dans mum & I we’re trying to work out how long Dan has had it but he’s always been different & you just never can know. I’m always here Veronica & love to hear stories & talk about memories if you need/want too. We’ve also contacted a hospice. Does it feel like anyone you speak to outside of the specialist hospitals don’t really understand? I feel like I’m screaming out & they just don’t understand.
Thinking of everybody
Nikki