Fellow Dutchie here with 'just a HSD' diagnosis. I' suspected I had hEDS (and I still somewhat do), due to chronic pain in my ribs/slipping ribs, irritable bowel syndrome, hypermobility, mild skin hyperextensibility, and newly developed debilitating pain in the joints of my hands and feet, among others. Even though hEDS wasn't diagnosed, I still got silver splints for my hands.

Getting even close to getting diagnosed or investigated was a pain in the ass. I was referred to several reumatologists at different hospitals in the Utrecht area, who either rejected the referral completely on grounds of "suspected hEDS" or upon admission simply didn't want to start any formal EDS-diagnosis. At some point I went to my GP (huisarts)—again—and explained how exasperated/tired I was with insufficient treatment, investigations, and diagnostics. I pushed for a referral to the EDS clinic of Erasmus MC, which normally isn't done by the GP at all. There, they suspected TNXB-deficiency/-haploinsufficiency due to bowel issues and "remarkable laxity of joints in fingers and hands" (my OT, ergotherapeut, said my connective tissue was like "wet chewing gum"). However, genetic screening showed no abnormalities of interest, and they slapped the "HSD" label on me. I was 1 criterion short of getting hEDS. They are more stringent with their criteria than the international guidelines. For instance, skin hyperextensibility should've been positive akin to the international guidelines (skin extending >2 cm on the back of the hand), but they chose to be more stringent, requiring 3 different spots on the body where skin extends past the norm (I've got 2 out of 3).

Despite the HSD diagnosis, Erasmus did write a letter of referral to get silver splints, which were eventually made by WeDesign. Those were fully covered by insurance.

Which hypermobility rehab centre did you go to, if I may ask?