Yes yes yes. My kids used to tease that they could write on mom, mine is often raised welts and sometimes not. I can trace 7 generations of EDS III. I found your site while doing some research on anxiety, ocd, aspergers, autistic spectrum, in EDS. I have long had my suspicions that overachieving/ drivenness or buzz bomb as it’s called in my house is tied to the EDS. Add in the generational aspect and it’s amazing to think about.
I am exploring mast cell issues this next week. I cannot remember a time when I did not have chronic skin issues. My medical history reads like I was one of your study cases. I am 52 with a 22 yr old son on disabilty since age 17 from EDS. POTS and malabsorbtion issues are serious for him. We got the EDS diagnosis when they were looking for Marfan. At age 13 he grew 7 inches in 6mo and scoliosis became apparent. He is getting close to being done growing and that has helped his pain. His diagnosis led to mine and then my daughter too.
I believe I am having a “flare” due to thyroid, diabetes and other endrocrine involvement worsening my fatigue, POTS and heat intolerance. Currently I feel like everything is sluggish I’ve been on amoxicillin and it does not treat my stomach well, lots of bloating and nausea.
My secret weapon has always been my zantac over the counter type meds…I just assumed anything that could inhibit an allergic reaction from foods couldn’t hurt. I eat I react..simple. Lots of food allergies, chemical too. So your study makes intuitive sense to me.
I have a question..Diomax is a sulphonamide ( hope I spelled that right) is there a med that can be substituted for those with sulpha allergies? Thank you for the fascinating info!