Hey y'all! I just want to quickly share my experience in case it's helpful for anyone looking for this information. I tried going to Biolife and CSL Plasma donation centers (in the US), but I was permanently deferred (aka, not allowed to donate until/unless their rules change) on account of my hEDS diagnosis. Biolife didn't give much info, but the staff member at CSL told me that any type of EDS is an automatic permanent deferral per the company's policy. The reason they gave is that EDS is sometimes linked with differences in the heart or blood vessels that might pose a risk for the donor.

I wondered if this would be an issue, but I didn't find information on the topic online at that time, so I thought I'd share it for anyone else who's curious.

To give my own, albeit limited perspective: I'm not a doctor, but based on what I know about my own body, I suspect that this policy paints with an unnecessarily broad brush. If it's true that some people with EDS aren't good candidates for plasma donation based on the reasons they gave, it doesn't seem to me that it's a problem for others of us. I've had relevant tests done by my cardiologist before, and they found nothing to be concerned about for any future medical procedures. If my understanding is correct, then donating plasma should be just as safe for me as for anyone else. Again, I'm not a doctor, so this opinion really hinges on that "if."

If it is the case that plasma donation is safe for people with EDS if they show no cardiovascular issues, then an automatic deferral shouldn't be necessary. Biolife already requires letters from doctors to confirm that certain folks are safe to donate. Specifically, I was required to provide a letter from my psychiatrist stating that I'm not physically violent on account of my PTSD diagnosis. Included in their list of questions for new donors was asking if you'd ever been diagnosed with PTSD, and I remember wondering why they'd even asked, but I answered honestly anyway. Even if there is a link between PTSD and physical aggression, there are a thousand other reasons people are violent, and I can't say I understand their specific focus on PTSD (I at least don't remember any other questions about mental health or history of violent behavior).

PTSD tangent aside, it seems odd that they would turn someone away on account of any EDS diagnosis when I imagine they could just ask for a note from the person's physician. I'm only speculating, and of course the much more important issue is that these companies are extremely exploitative of donors, staff, and patients who rely on plasma-based medication.

What's everyone's experience with L-Lysine supplements? I found some references last night that I thought were interesting, they indicate L-Lysine and a vitamin C supplement could be helpful.

The main idea, to me, is to get collagen to build up. I've seen that one of us needs an excess of vitamin D in order to maintain basic healthy levels. Maybe we need to approach proline, glycine and lysine in the same way? What's been your experience with it?

First forum post, at inspire.com:

https://www.inspire.com/groups/eds-and-hsd/discussion/success-with-vitamin-c-and-lysine-supplements/

Similar results were found for in the comments by Dale on Nasar Nutrition:

https://nasarnutrition.com/ehlers-danlos-syndrome-supplements/

And this article sums up nicely where lysine fits in all of it:

Collagen is assembled in a triple helix design from the amino acids proline, glycine, lysine, and hydroxyproline. Amino acids are the building blocks of protein.

https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/newsfeed-post/supplements-part-2-collagen-supplements-and-edshsd/

Obviously, I'm unqualified to diagnose myself with EDS, but there's several signs I'm seeing after reading the article posted here, and family members bringing it up as a potential cause/link to another medical condition of mine.

At the end of this month I have a new patient intake appointment with a Primary Care Physician (US healthcare unfortunately.) I'd like to ask them to help me determine if I might have a form of EDS. I've known since I was a child that I have hypermobility, but never knew EDS was even a thing or that it could impact other areas of health and the body, and the more I read into it the more "symptoms" I find that I just thought were odd but part of my funky physiology (scarring, bruising, digestion, foot pain have stood out the most.)

As I'm reading more and more into the forms of EDS and its traditional testing methods, I can't help but wonder if this doctor (or most others) will be hesitant or refuse to test for it. I'm not looking to get much more than knowledge for myself concerning the way my body behaves; I certainly don't expect or want a doctor to diagnose me and start throwing treatments on it.

This leads me to my question(s): Has anyone here that's been diagnosed with a form of EDS felt they were largely dismissed by their doctors, regarding EDS or testing? Also, for those that have been diagnosed, do you feel the diagnosis was ultimately helpful or hurtful to you and/or your treatment during medical care?

TIA

I feel like I can't stop oversharing when people ask me about my injuries. I'm in a medical boot right now from injuring my foot during a 5 mile walk, and people get confused when I tell them this. And then I end up explaining I have a connective tissue disorder.

I dont want to lie. But I wish I didn't get so many follow up questions. 😭