Help Us Raise Awareness About Adrenoleukodystrophy, or ALD!

The word adrenoleukodystrophy doesn’t exactly roll off the tongue, does it?

Adrenoleukodystrophy (ALD) is an exceptionally rare genetic disease that affects one in 18,000 males. If you’re one of those 18,000 people, that’s a large enough number.

A disease of the brain, it occurs when myelin is destroyed. Myelin is the protective sheath that surrounds the neurons. In other words, the nerve cells that provide us with the ability to think and move.

Unfortunately, the onset of ALD usually presents itself when the patient is between 4 and 8 years old, and with maddening ferocity. It is usually fatal within five years of the diagnosis.

Research is beginning to bear fruit as far as developing treatments go. But for science to move forward, awareness of ALD needs to be raised.

The more people who are knowledgeable about this disease, the easier it is for foundations like Stop ALD to raise research dollars.

One family in Ireland is dealing with not one, but two sons being diagnosed with ALD. When twins Ryan and Jack were born, their mother says they were two perfect, beautiful boys.

Everything went well until the boys were six, when the mom noticed Ryan was having unusual symptoms like clumsiness, and he seemed unable to concentrate. Test after test determined nothing, so a second opinion was sought.

It was then that Ryan’s parents heard the unfathomable news. Ryan had ALD. Knowing that ALD is so rare, they decided to have their other two children tested, and the younger son also tested positive.

Read more about Ryan and Jack here. Let’s keep spreading the word.

Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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