THIS is ALD too (no more “c” word)

[KennyInPA]

A very interesting and well written article regarding women carriers and ALD.

smilesandducttape.com/2019/...

[jolocny Volunteer]

Thanks for sharing this, KennyInPA! I’ve saved it to read later. It always interesting to read what’s up with other carriers - and SO supportive of what we may be experiencing!!

[jolocny Volunteer]

This is the obvious in a nutshell! Carriers are no longer on the shelf and never had any reason to be. I'm so sorry for my sisters that have passed on that never had their symptoms taken seriously.

I know that, although I've been placed in the 20% of "advanced" symptomatic carriers, I don't have many of the troubles the rest of you do. I'm to the point of "nope, can't feel that" in my lower body. I live in a wheelchair because walking is in the past for me. I will return shortly to PT to try to gain some mobility and strength in my legs - which left when I tore rotator tendons in both shoulders. And ya know what?? I'm doing it for me.

I saw my doctors and their team in September and have been written off by them. They, quite gallantly, told me that I'd never get any mobility or strength back in my legs. I don't believe that. I've been relieved of annual review of my case by them … maybe it's time to find new medical care.

Unfortunately, as a female carrier, that's hard to find. The medical teams are focusing on the children and young adults with ALD. Not to say that shouldn't be their focus … it'd be great to have a team to devote time to helping us bring our dreams to fruition. To find a doctor and team to do that would be a dream.

I won't get back to walking unassisted, I've been in a WC for too long. I'm active and I'm able to hold an important position in society. This is because I do what I can physically and then ask for assistance in order to complete a task. I won't lie down and give up.

To all the female carriers out there ~ don't give up! If we strive for better care it may happen in our lifetimes. Why the hell not.