Watch this video!

I've tried my damned-est to insert a link to the video below now 3 times. I may have explained before, but I have a Windows 8 phone, and it really doesn't like Google, who hosts this website. So I have to do things "the hard way."

Anyway, the video in reference is on YouTube, titled, "What is ALD? Adrenoleukodystrophy explained." and it is by YourekaScience.

The explanation paragraph states:

"What is ALD?
Adrenoleukodystrophy is a devastating genetic disease that affects the myelin around neurons in the brain and spinal cord.
Learn the biology underlying the disease and what potential treatments may come from ALD research.

This video was produced in collaboration with ALD Connect (www dot aldconnect dot org)"

This is the most comprehensive and succinct explanation I've found in the 17 years I've had a name for the family curse. I still can't tell you with certainty what a peroxisome is and what it does within a cell, but if you pay more attention than I did, you will. I had to repeat sophomore biology as a senior in high school, so everything I know about this branch of the Leukodystrophy tree, I've had to struggle to learn. Even my status as a symptomatic heterozygote was cloudy at first.

Watching myself slide into the inky depths of AMN has been heartbreaking: being on Social Security Disability and taking the financial hit, the pain and stiffness, the alphabet soup of pharmaceuticals and diagnoses, and the ensuing depression have been so hard! What have kept me going are my beautiful boys, Patrick and Andy, and my mom and dad. Thanks to their love and support, I've been able to manage day-to-day for many days past and more to come. I gotta stop. I gotta go. I can't tell ya where I'm going. I don't even know.

- M