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Leukodystrophy Carers
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Hi, my name is Alisha. I’m a 33 year old carrier of ALD. My family found out about this disease when my brother Gary(Pine_Knot on here) started having major symptoms! Unfortunately he passed away from this horrible disease in May of this year at the young age of 35! I also have a 4 year old boy who my brother always said was his special little buddy! They had a lot in common being as they had the same disease and both had addisons too. At 4 Barrett has a MRI every 6 months and all have been good so far! Thank God!! For myself I’m not really showing any major symptoms just a little numbness in my toes.

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Hi Alisha, I am so sorry to hear the devastating news of your brother and my thoughts are with you and your family. I am glad to hear that your younger brother is doing well and is having his regular MRI scans. Are you in the UK? I am the Support Services manager at ALD Life so please get in touch my email address is karen@aldlife.org


The little boy ( Barrett) is actually my son. ☺️ No we are in the US.


Hello Alisha, I’m terribly sorry about your brother and hope your son is doing well. You mention he has Addison’s so I suppose he is taking cortisol replacement/supplement?

My son’s adrenal levels came back abnormal and may be taking hydrocortisone soon, we have an upcoming stim test. I was just curious how your son has fared with Addison’s, does he get sick often, is he lethargic. I just worry about quality of life after reading all the side effect of hydrocortisone and would love to know how it’s been.

Hope to hear back from you.❤️


He is really doing great! Before he started taking hydrocortisone and fludrocortison he was always sick and like most normal kids a 24 hour sickness would be more like a 72 hour sickness for him. He just could not get over little stuff and would run high fevers the whole time. He was 11/2 and I would always find him laying around. We started taking the meds and everything changed. When he gets sick it’s is just normal and he don’t get sick a lot like he used to! He NEVER stops, probably one of the most hyper children I have EVER seen and I have been around lots of children! Lol I am really faithful with making sure he gets his meds and giving stress doses when needed! Once he does go to sleep he sleeps for at LEAST 12 hours and I have to wake him up. I think he has a hard time getting awake. My brother always told me he had a really hard time getting awake. How old is your son?

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It sounds like being on the medication is really a blessing and I’m so glad he is doing well.

My son just turned 1 in October.


I hope everything goes ok with him! I will tell you the hydrocortisone is really horrible tasting. It’s extremely bitter. They don’t offer in a liquid so when he was little I would have to crush it up. I tried mixing with several things and chocolate syrup worked the best! I would mix in a spoon and suck it up in a syringe! The spoon worked best cause if I used anything else I would seem to mix to much. He always took medicine really good so I was lucky I didn’t have to fight him every time(3 times a day)! I started working on him really young trying to teach him how to swallow the pill and he finally got. He’s a pro at it now!


That’s great that he can take it in his own now, makes it that much easier. Thank you so much for sharing your technique! Who doesn’t love chocolate syrup! Lol

Just got my son’s stim test result back and he will be starting his regimen this week too.