@TheEDSociety 1-) Could my family be enrolled? We have at least 5 of us with symptoms, & have ruled out other types for 3 of us. One family member has the COL12a1 gene. This family member has contractures of the thumbs. Another has dislocating shoulders. Two have Chronic Acid Reflux,...
@TheEDSociety 2-) One has Scoliosis. We all have Piezogenic Papules. At least 3 of us have perfume allergies. I had Placenta Abruption. Several of us have slight Ichthyosis, which was mentioned when I looked up the COL12a1 gene. I have had Bilateral Foot Surgery for Plantar Facitus,...
@TheEDSociety 3-) Bilateral Carpal Tunnel Syndrome - (CTS), which according to Dr. Ericson who spoke with the Ehlers Danlos Society, around 50% of people with EDS,or HSD are misdiagnosed with CTS, & it is probably the most misdiagnosed problem in EDS. HELP EDS hurts! ...
@TheEDSociety 4-) My hips, & feet are hurting as I write this. I get debilitating migraines, with nausea, & the end result of the nausea🤮. I always end up in bed until the next day. It happens after being exposed to perfume, & other scented items. I suspect MCAS. We also all seem to have...
@TheEDSociety 5-) some type of Dysautonomia. My legs & feet swell, I also have symptoms like Erythromelalgia, but I don't know if it could just be Dysautonomia. At least 2 of my kids have diagnosed ADD. One has been diagnosed with Dysgraphia, & Dyspraxia as well. PLEASE HELP us!
• • •
Missing some Tweet in this thread? You can try to
force a refresh
