Ehlers Danlos Syndrome (hEDS), Erythromelagia

The story of Kate

I have suffered from dislocations most of my life mainly in my ankles and hips. But after a period of really bad health in my late teens I was referred to a specialist rheumatologist and diagnosed with hEDS. I have a mitral valve prolapse and problems with tachycardia related to POTS and also autoinflammatory recurrent fevers and allergy type reactions. I have erythromelagia which is similar to reynaulds but causes my hands and feet to feel hot and painful. My joints are painful and dislocate regularly and I often have to go to hospital for this. EDS has always been there but it has definitely worsened in the past few years. I am glad that EDS is finally getting more coverage and hopefully more research as a result of this. 

 

*Find others with Ehlers-Danlos Syndrome on RareConnect, the online platform for people affected by rare diseases