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← Return to Anyone out there heard of Adrenoleukodystrophy (ALD)?
Anyone out there heard of Adrenoleukodystrophy (ALD)?
Hi @beverlymarks, have you been diagnosed with adrenoleukodystrophy (ALD)? Did both your brother and son die of the same condition?
Reading more about ALD here https://www.mayoclinic.org/diseases-conditions/adrenoleukodystrophy/symptoms-causes/syc-20369157 I see that ALD can be diagnosed in childhood or as an adult. And that the symptoms are often more severe in males than females.
Were you diagnosed with adult-onset ALD? What symptoms do you find the most challenging?
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Yes I have been diagnosed with Adrenaleukodystrophh. Yes my son was diagnosed with it. 65 years ago they knew nothing. My sister and mom were both diagnosed with it. Now my niece and her son were also diagnosed. My nephew was diagnosed with addisons. When will this stop..
I hope you can direct me to Drs that can be helpful to help. I have a gait imbalance and I am falling alot. I also have bad headaches.
I was Diagnosed with Ald. I can say I noticed.3 years ago with the neuropathy in my legs. I now have to use a walker to get around and balance. I also developed skin itching. Also Irritable bowel syndrome. My neurologist has never seen a patient with Ald. If I could I would do stem cell. I would also take Lorenzo's oil. It has not been recommend. If anyone has any information, please let me know
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