Adrenoleukodystrophy

Living with

I have been diagnosed with ALD and several of my family members have ALD, what should I do next?

Below are a few helpful steps if you have been diagnosed with ALD and want to know who to see and what to do next:

  1. The best place to start learning about ALD is seeing a neurologist or genetic doctor in your area that focuses on ALD. If you haven't had genetic testing for ALD they can help order that. A medical geneticist can be found by asking your doctor for a referral or looking on the American College of Medical Geneticists website.
  2. There is an adult form of ALD that is called Adrenomyeloneuropathy or AMN. A neurologist of genetic doctor can confirm this, but in the meantime ALD Life has a great on-line brochure called Practical Information for Men with AMN.
  3. Currently there is no cure for AMN, but to learn about treatment options it can be very useful to reach out to the Moser Center at Kennedy Krieger. You can all them at (844) 334-3211 or visit their website.
  4. There are some options for support and learning more about life with ALD/AMN. Start by talking with David Cry at the ALD Foundation. He can be reached by phone at (985) 718-4728 or email at information@aldfoundation.org. Other support sites that could be useful are the StopALD Foundation or the Myelin Project.

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