New in fight with ALD: Hello everyone... - Leukodystrophy Ca...

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New in fight with ALD

MonaStoica
MonaStoica
5 Replies

Hello everyone,

My name is Ramona from Romania,my son was diagnosed recently with X-ALD ,he has 8 years old,we didnt knew anything about this disease till now,we still dont know much so thats why i came here to ask,read,share informations with you.He is not now eligible for a stem cell transplant or brow but we hope we can enrolate in a program with genetic therapy.Do you know something about this?Has anyone experienced this?What food regime we have to fallow(i know it doesnt cure but....)

Thank you!!

5 Replies
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aadilmadarveet

Hi Ramona sorry to hear about your son but May I know why he is not eligible for stem cell transplant... and for now what symptoms he has... have you done his MRI ... if yes what is his loes score?

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MonaStoica

Hello,for now only his behaviour changed a bit and he lost some of his school knowleges(reads hard,math is low though he was very good,)some memory lost on short term.From what i read if the disease is at the begining he can do the cell transplant but Dr.said that for a succes transplant he should be asymptomatic.He did MRI,nervs speed test,VLCFA and now we wait the genetic test's result(ABCD1).All the tests results shows the presence of X-ALD.

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aadilmadarveet

What is the loes score of his MRI as even my son is 8 years old and his score is 9.5 we are started his process for stem cell transplant hoping for the best if your son is also having the minimal symptoms then I would suggest go for it as the disease May halt and he can live his life without any disability hope you must have read the progression of this deadly disease and do take a neurologist opinion on this ... hope this will help your little one... let you know the progress of my son in another 2 months till then you can see for a match for your son as the stem cell preparation takes long time.... time is the essence so don't lose hopes and keep do take the specialist opinion in this

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tramynguyen12

Hi, so sorry for your son. My brother was 8 when he caught ALD and unfortunately, it was too late. You may try to consult doctors in England or in France and Germany, they know well enough about this rare disease. In facebook, we got a forum for ALD families. Here is the links:

facebook.com/aldconnect/

facebook.com/groups/1695273... ---> this one is very active

and I know a doctor from Minesota, DR Raymond Lund, He is a specialist in Neurology and ALD so you may write to him.

I know it will change your life forever and frankly, I hate ALD but keep faith and don't loose hope. Through new born screening, ALD appears that it isn't rare as it seems.

Be strong my friend.

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MonaStoica

Thank you for the link and your words.Sorry for your brother,is a really ugly disease and even worse when it strikes like this.I keep beeing positive.Thanks again for your suport.

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