I'm 69 and Still awaiting a complete diagnosis of my type of EDS but I'm getting there! I am determined to get this for my sons dead and alive. I was finally diagnosed with Sjögren's but it wasn't it was Lupus from age 3. I said to my consultant ophthalmologist i was born with an umbilical hernia a lazy eye early talking 13 months, late walking 23 months and by age 3 I had terrible mouth ulcers. He replied Lupus. Quite correct I have Lupus. It gets worse now that PCOS and mast cells are in EDS! Our first son was a cot death in 1974. My mother had Lupus and scoliosis and died from APS. My father had EDS. I have now been diagnosed with POTS, severe neuropathy associated with both and while I have EDS my POTS relates to my autoimmune diseases Lupus and Sjögren's. I have even diagnosed my GP with EDS and Lupus! I have his permission to tell you that. We both have EDSVIII which dropped off, in 1997 when they changed the criteria. I'm awaiting the proper diagnosis of EDSVIII but it's very obvious if anyone looked in my mouth!
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