I’ll do a double post in one… 1st, as promised when I first posted here about genetics in the Cleveland Clinic, I can say that I had a wonderful experience there. I saw Dr. Aditi Yadav (geneticist), her nurse, and the general nurse that greats patients and gets them ready for appointment. All were absolutely wonderful, and Dr. Yadav, while not specifically an EDS/HSD specialist, was still very knowledgeable, and explained everything step by step as she went over the diagnostic criteria, she was very gentle, she discouraged showing full range, and only as much as she needed to see for the sake of criteria requirements. They were all very respectful, understanding, knew what questions to ask, and could answer all questions that came up. If you are leaving close enough to make it a sensible place to go in person, you do need to see a GP within the Cleveland Clinic system to get into their genetic clinic. Wait time will depend on your condition, so when seeing the GP you want to bring in all info written down so they can add it into your chart for them to see. I’m pretty sure you can do a Telehealth appointment with the GP, but don’t want to say for sure, because I did go in person for mine. My diagnosis is HSD, and she gave suggestions of doctors to consult with farther, and she did hear about TZC and was very pleased to hear I’m already here. 2nd, crutches… I sprained my ankle in bed this morning, or did something else to it. on one hand GP said to try and stay off foot as much as possible for a few days, on the other hand he is worried about crutches with my shoulders and ribs. Does anyone have any experience with crutches that did not cause issues? I know from childhood that the regular ones that have a bar below the armpit cause a lot of pain (possibly subluxations now that I know what those feel and look like… and fully agree with his worry on those, but was wondering if there’s any others that might not be as much of an issue? Thanks!

Posted by lior at 2022-11-03 02:40:12 UTC