Living and Aging with Hypermobility Syndromes - Dr. Irman Forghani - 2022

[@maryr7593]

They should educate physical education teachers in elementary and middle schools since they are more likely to observe the hypermobility in many different ways. Not all hypermobile ppl have HSD/h-EDS but if families are aware of these conditions due to phy ED teacher's observations...they can bring up to drs if symptoms progress as child get older. Also when child is adult...being aware of genetic expression that could produce HSD/h-EDS symptoms later in life (kind of like having breast cancer in the family...don't know if it will occur but you can check for it). Not to worry someone but if they start having odd seemingly unconnected symptoms that affect many body systems...being aware that there is a genetic possibility in the family, doing the research to see if anything fits, and ultimate diagnosis is important. Hypermobility in physical education /exercise/sport is easy to spot if teacher /coach knows what to look for. Even if they give ED society brochure to parents in parent teacher conference...heads up ...in case symptoms develop later. Or especially if the kid needs remedial work with eye hand coordination/running through obstacle course, as my mom said I needed after kindergarten...to get me up to speed with my peers. Unfortunate that was in 1976 for me. (Now research says kids who went through such programs had a higher likelihood of being hypermobile. (Back then it was called double-jointed...though they say the term was totally incorrect.)

[@maryr7593]

Nobody seems to discuss the possibility of venous insufficiency in hypermobility syndromes. Due to connective tissue failing, the vein valves can fail. Hypermobility is a high risk. There is a lot of pain in the legs as well as those numbness issues. My MD almost dismissed my leg heaviness, pain to the typical pain that hypermobility can cause. Luckily my pcp ordered a venous insufficiency ultrasound and found the insufficiency. Women over 50 are affected more often. Those of us who couldn't get a diagnosis until after 50...due to insistence...discovering the venous insufficiency might be overlooked if female patients do not fit the typical criteria. Without diagnosis...this would be completely overlooked. (For 10 yrs no dr would consider that I would have any hypermobile syndrome and "there is no cure, so what is point". For many, many reasons...diagnosis is important especially for the older ones who have not been diagnosed with HSD/h-EDS. We tend to have many comorbidities before we actually get the HSD/h-EDS diagnosis.

[@trish5111]

Thankyou for raising this ! I am going to look into venous insufficiency. I believe it could be behind some of my issues and also could be exacerbating my pain from peripheral neuropathy. In spite of being diagnosed with osteoarthritis at age 18 and having had a rheumatologist since a work related neck injury in the late 90s, I was not diagnosed with hEDS until 2018. This only happened, at the age of 50 - when a friend sent me 'the list' of symptoms used to diagnose it !

[@divacassandra1]

MCAS, POTS and neurodivergence

[@teresareinert8271]

I was looking for an answer to why my veins were so weak that they bust while sedated for steroid shots in my lower back. I found CB out I have HEDS my Dr found a geneticist that diagnosed me. She sent me to have DNA tests all came back negative so no vaslurs thank goodness. I was told HEDS suffer from weak veins. I have a port now.

[@DrReedB0928]

I totally agree! I went for years with numbness and tingling in my feet and it was finally diagnosed as tarsal tunnel syndrome which was directly related to my hypermobility. I created a KZbin channel recently to help people share stories so we can learn from our unusual experiences. Please consider joining and sharing with someone who may benefit😊

[@dhruv_mundhra_]

Is it possible to get this ppt

[@TheEhlersDanlosSociety]

Please reach out to our helpline - if available, they can connect you with the PDF! www.ehlers-danlos.com/eds-helpline/