THIS is ALD (one story at a time)

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For the past few months, I’ve been asking people to share their Adrenoleukodystrophy (ALD) stories to post on my blog, Smiles and Duct Tape. My goal has been to educate readers on all the different ways that ALD can affect people AND to prove the importance of Newborn Screening for ALD to help change the future of our disease.

The ALD community has been amazing — sharing honest, powerful, sometimes painful, sometimes beautiful pieces, and the stories continue to roll in. I’ve decided that it’s time to make THIS is ALD into it’s own blog.

Hopefully, we will gather so many stories here that it can become a resource for ALD families to find their community and for non-ALD folks to better understand our disease.

Welcome to THIS is ALD (one story at a time), the blog.

Love, Jess

If you have an ALD story, please contact me at jctorrey@mac.com.

 

 

 

THIS is ALD #18 — Margaret

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If you haven’t read THIS is ALD #17, go back. It’s an incredible piece showing how ALD can weave itself through a family for generations. It was shared by an ALD mother/daughter/grand-daughter/great-granddaughter. She is also a symptomatic carrier. THIS is her story.

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THIS is ALD #18 — Margaret

I first started noticing little things, symptoms, in my 20s. The first thing I distinctly remember is the feeling that ants were crawling on my lower legs. Then I had back spasms; I’d be sitting at work and my back would knot up. I attributed it to having to sit a lot at work. But then I started visiting a chiropractor who did massages and we couldn’t figure out why or how my neck muscles used to get so tight in between appointments. I then started to visit a massage therapist, leapfrogging between the chiropractor—and my neck and shoulder muscles were…

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THIS is ALD #17 — Margaret, Andy and a long family history of ALD

smiles and duct tape

THIS is ALD.jpg

This is ALD #17 — Margaret, Andy and a long family history of ALD

My name is Margaret Bray. I’m 47 years old and an ABCD1 obligate, symptomatic, carrier (more on this will be posted tomorrow). Out of my three sons, only my middle son has inherited the gene. My sister is Jamie Garrison Barlow and she’s a carrier. She passed the gene to both of her kids – a daughter and her son, Bradley Hartman, who passed away last July at the age of 21. Her daughter gave birth, with a little medical assistance, to a beautiful girl on July 1, 2017, who is not a carrier. It’s a wonderful and beautiful story!

My mom is a 72 year old symptomatic carrier. She is Jamie’s biological mom also. (Jamie was given up for adoption at birth by our mom. She was reunited with Mom and met me on November…

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