I got sent this video via someone at work (they send me a boatload of running related stuff) and I have to say it was interesting and a little moving, if I'm honest as I've never heard of this condition.
This interview with Lara Bloom, really hit home, like. Completed the London Marathon in 8 hours by walking due to being in constant pain and suffering connective tissue issues
https://youtu.be/d51ju5RXsIQ