Ehlers-Danlos Syndrome and Peptides

[bibson]

After some significant flaring of dysautonomia (very likely POTS,) lifelong hypermobile weirdness and injuries, and a laundry list of symptomology, I'm in the process of getting diagnosed with Ehlers-Danlos Syndrome. My body feels like it's falling apart a bit and I'd like to slow the dominoes falling as much as I can.

I was wondering if anyone here has EDS/a connective tissue disorder, and if any peptides have helped in treatment or preventative care. I'd immediately think GLOW/KLOW and other peptides that help the uptake of collagen might have some effect, but EDS has so many negative quality of life effects that I imagine there may be other peptides that help as well.

Anyone have experiences or thoughts to share? Thanks!

 

[data259]

I'm very interested in this topic too. My sister has some sort of auto-immune condition going on with elevated ANA numbers, and it also seems to have to do with connective tissues, but I don't think she has actually received the EDS diagnosis. They're still trying to pin it down. But I was telling her about KPV and KLOW and what I have been reading about them. She is interested but we'd like to know if someone else has had any experience using them.

 

[bibson]

I'm very interested in this topic too. My sister has some sort of auto-immune condition going on with elevated ANA numbers, and it also seems to have to do with connective tissues, but I don't think she has actually received the EDS diagnosis. They're still trying to pin it down. But I was telling her about KPV and KLOW and what I have been reading about them. She is interested but we'd like to know if someone else has had any experience using them.

I'm doing genetic testing to confirm diagnosis myself - depending on the variant, it's a real pain to get the DX, good luck to her.

I actually did run a brief KLOW cycle for 2-3ish weeks but stopped due to an emergency move that messed up all my peptide routines (and the stress of which caused the flare!). In the time I used it I found that most of the stretch marks that cover quite a bit of my body (another fun EDS trait!) faded significantly, and that was without additional collagen uptake. About to get settled into my new place and I have a ton of gelatin + collagen supplements that I'm gonna be using on top of KLOW to maximize my body's ability to actually use collagen. I think I'll keep a log of the effects and take pictures of current scarring/note of current EDS issues before I hop back on. Might as well pass on what I learn if I'm gonna be a lab rat!

 

[conzopiriani]

Exceedingly interested and will be following your journey.

 

[Higgybaby]

After some significant flaring of dysautonomia (very likely POTS,) lifelong hypermobile weirdness and injuries, and a laundry list of symptomology, I'm in the process of getting diagnosed with Ehlers-Danlos Syndrome. My body feels like it's falling apart a bit and I'd like to slow the dominoes falling as much as I can.

I was wondering if anyone here has EDS/a connective tissue disorder, and if any peptides have helped in treatment or preventative care. I'd immediately think GLOW/KLOW and other peptides that help the uptake of collagen might have some effect, but EDS has so many negative quality of life effects that I imagine there may be other peptides that help as well.

Anyone have experiences or thoughts to share? Thanks!

I have a laundry list as well. Dx'd with hyper pots, and hypermobility.My rheumatologist blew me off when I asked for testing for eds. I'll likely pursue this on my own at some point. I'm also HLA B27 positive, and suffer from a lot of inflammatory pain.
Still researching over here, not finding all the answers quite yet, but starting to feel better in a lot of areas.