Ehlers-Danlos Syndrome?


#1

Does anyone else here also have Ehlers-Danlos Syndrome in addition to diabetes? EDS is a genetic connective tissue disorder (dominant inheritance pattern, or can be a new mutation). I have the hypermobility subtype, which comes with hypermobile joints throughout the body, muscle pain/chronic pain, and often dysautonomia and unusually soft skin. (There are other types that also have more skin symptoms, like really stretchy skin, and some types with more vascular symptoms, since they are various connective tissue disorders.) It’s also associated with an immune disorder called Mast Cell Activation Syndrome. Anyway, it’s made dealing with diabetes more complicated in a number of ways (dysautonomia makes me hyperreactive to hypoglycemia symptoms, which has pros and cons, the joint stuff has made exercising very challenging since I’ve gotten hurt doing super mild stuff like using an elliptical, etc). Just curious if there are on here with it… I’m guessing it’s a long shot, since EDS is rarer than diabetes, though it’s also very under-diagnosed.


#2

I’ve met someone who has it but did not have T1D. Interestingly, the issue with the connective tissue in the gut has made her allergic to a whole host of foods, which I thought was an interesting connection to diabetes as gut microbiome has been implicated in the etiology of T1D.
Sorry can’t help you with your question though!


#3

Interesting—my guess is your friend actually had those sx because of Mast Cell Activation Syndrome—basically, mast cells are hyperreactive, and so the person has to go a low histamine diet (which is a lot weirder/more random-seeming in its many restrictions than most other diets). MCAS is highly associated with EDS for unknown reasons. I don’t seem to have that, or at least not to the level of needing a restrictive diet for it (yet anyway, knock on wood, although I do have a sunlight allergy which may be related), but given that mast cells play a role in islet cell destruction, I’ve wondered if there’s some overlap in how Type 1 happened for me, especially since I have no family history of T1.


#4

I don’t have it. But I have a whole host of various allergy issues, and one of the conditions I have is apparently associated with connective tissue disorders, so one of the groups I’m in has a good number of people with EDS (and also mast cell disorders).

I didn’t know mast cells were involved in the destruction of beta cells. I’ve had issues with allergies my entire life, including a severe case of cold urticaria (basically an allergy to cold, that in my case was severe enough to cause anaphylaxis) that developed about a year before I was diagnosed with Type 1 and (thankfully!) disappeared in my early 20s.


#5

I know this thread is old, but I do! I was recently diagnosed with classical EDS. I was diagnosed with type 1 diabetes 13 years ago, dysautonomia 2 years ago, POTS and gastroparesis 1 year ago. EDS is kind of like the missing puzzle piece, everything makes sense.


#6

Hi! I totally know the feeling—I hadn’t been diagnosed with POTS/dysautonomia formally before my hEDS diagnosis, but thanks to a smart neurologist a long time ago, was already on a beta blocker to treat it (which helps a lot, but def doesn’t fix it). Sorry you have to deal with all of that too, but if you ever want to chat about it, let me know!


#7

Have you tried insulin pump therapy - has it helped control the diabetes with the gastroparesis?