two kids diagnosed with ALD - Leukodystrophy Ca...

Leukodystrophy Carers
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two kids diagnosed with ALD

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I have two son's who have been diagnosed with ALD.

One of them is 8 year old and the other is 3 year old.

Both don't show any physical symptoms of ALD as such. The only symptom the elder one has is lack of concentration and forgetfulness. Does this mean my elder son is symptomatic? I am not able to conclude on this.

I am planning to get the elder one treated with a bone marrow transplant. He has a loes score of 9.5 in the most recent MRI we did.

I have joined this community to converse with other people who are going through this and to learn how they are fighting this disease.

I see there are a lot of organisations and hospitals who dealing with patients with this disease in USA. I live in Bangalore, India. The education and information about this disease is far worse in India, even the doctors are not well aware of this disease.

If you or a family member of yours is going through this. How have you planned to get the treatment done and do you have any suggestions for me on how can i choose the right treatment for both of them.



1 Reply

Hi Aadil, I am so sorry to hear of the diagnosis of both your sons, this is a really difficult time for you and I understand that there is a lack of knowledge of ALD as it is a rare condition. I am the Support Services Manager and I can help with information and support so please email me and I will do my best to assist you.