Neonatal Adrenal Leukodystrophy

[KatieeeK]

Hi everyone 👋 I just stumbled across this during my routine search on the internet for info on ALD. I take care of my twin brother who has Neonatal ALD. His symptoms started as an early infant Progressing fast and eventually diagnosed. We are both 36 years old. For some reason he didn’t die. He was never treated because by the time they figured out his diagnosis, the ALD already progressed too far. Seems like his symptoms have started progressing again about 5 years ago tho when seizures started, liver failure, etc. It’s been a rough road and I’m always interested in others stories and any information on this illnesses.

[KerriDeNies Moderator]

Hi Katie,

I can’t find the link to the article...do you mind reattaching it? I’m sorry to hear about your brother and all you and your family must be going through. I would be interested to understand it further. My son is currently a-symptomatic. I found out through newborn screening over 2 years ago. The more knowledge I can get the better! ❤️ Kerri

[KatieeeK in reply to KerriDeNies]

Hi Kerri,

I'm sorry I don't know what you mean, I didn't post a link?

Katie

[KerriDeNies Moderator in reply to KatieeeK]

Hi! I think I was confused...I thought you posted an article with the info you found!? No worries:). Kerri

[ElisaS Moderator]

I'm so sorry to hear this. Do you have ALD experts that your brother sees? If you need any suggestions let me know.

[KatieeeK in reply to ElisaS]

Thanks ElisaS,

My brother only sees Doctors for the different symptoms and problems And also has seen a genetisis. Id love to hear your recommendations for ALD experts. I feel like my brother is a miracle that hes lived this long and ALD experts would probably be interested in knowing too.

Thanks,

Katie

[ElisaS Moderator in reply to KatieeeK]

Where do you live?

[KatieeeK in reply to ElisaS]

We live in the Tacoma/Seattle area in Washington State