Hi. I’m new. Sorry this will be long! I don’t know if anyone is still reading this discussion, but it sure is interesting. I’m not diagnosed with EDS, have only been told by a geneticist that I may have something “similar to EDS”. But I am diagnosed with dermatographism, thyroid nodules which eventually made me hyperthyroid (was hypothyroid in past), allergies to lots of meds, chemicals and possibly some foods (definitely milk/lactose, also cocoa butter which is in chocolate-so sad!), Fibromyalgia, Erythromelalgia (the most painful), Raynaud’s, Glaucoma, Dry Eye Syndrome, GERD and IBS (may be gastroparesis), cutaneous vasculitis, frequent upper respiratory infections, heat and cold intolerance and lots of other issues.
The dermatographism was always present, even as a kid, but became a real problem one year when I had constant sinus infections, fungal or candida infections all over including my tongue (ugh), and was losing weight like crazy. That was all diagnosed as being caused by an inability to digest fats properly, leaky gut and chemical sensitivities.The allergist told me that mild dermographism was very commonplace, 30% of the population. Mine was “moderate” and is now mild (on antihistamines). Getting my hair cut used to cause welts all over my neck. And I always warn people taking blood or giving me injections to expect a wheal, so they don’t panic.
I’m from a tall family too, but I’m the short one at 5’6″. My sisters, mom and grandmother were all 4 inches taller. The men are really tall. One nephew is 6’6″ and has Asperger’s in addition to unusual physical problems. A great niece who is only 15 is 6’2″.
Wish I could find an EDS specialist in Richmond or charlottesville VA. I am considering seeing a Mast Cell Disorder specialist here, but I’m nervous about not being taken seriously and I’m sensitive to Dr’s with that attitude.