This is so crucial and great we are talking about EDS and these issues. I wasn't diagnosed with EDS until I was 25yrs old after some extremely traumatic damage to my various pelvic ligaments following childbirth. I went into the nursing field of work and had a pregnancy because I did not know that I had EDS. If I would have known all the risks/complications to myself and my child, and that I had a life altering genetic issue I could likely give to my child too, I would have never gotten pregnant! I also would have never gone into the nursing field which is full of mostly jobs involving heavy physical work and heavy lifting, long shifts, etc. I am now permanently partially disabled and unable to work as a nurse due to bending and lifting restrictions and pain. Due to the damage from the childbirth and a subsequent botched pelvic surgery I have difficulties with some of my basic ADLs too and it is a daily struggle. Much of this could have been lessened, delayed, or maybe even outright prevented had I been diagnosed sooner with EDS. Now at present I am close to 40yrs old and I can say that the symptoms and co morbidities of EDS tend to stack up with age. I developed IC and POTS/MCAS in my mid to late 30s, and did not have these issues previously. I get more joint and digestive pain now as I continue to age, and I seem to injure myself and dislocate easier as I grow older and my collagen ages. It is just more to add to the list of things that cause issues. Knowing that EDS is present and taking steps to prevent advancement of the issues is crucial to long term outcomes for patients.

As a mom with EDS with a child who meets criteria, I'd love to hear what you all think about the change in diagnostic criteria for pediatrics to no longer be able to diagnose until maturity. Seems ridiculous to not diagnose a genetic condition until maturity if the child meets criteria.