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How would you feel if you’d been battling along, learning everything you could about the rare disorder you’d been diagnosed with…. only to, 7 years later, be told that’s [...]

An Interview with Alexandra M.K. who is still wondering, “what type of zebra am I?” Your age: 36 What’s your diagnosis? Ehlers-Danlos Syndrome and the geneticist is still looking to [...]

In preparation for Rare Diseases Day, 2019, I was able to interview Tianne, 24, who lives with both Ehlers-Danlos Syndrome and Marfan Syndrome (yes, it’s possible to have two connective tissue [...]

Relief. Reassurance. Validation. Shock. Denial. Anger. Grief. Acceptance. Peace. Self-respect. These emotions all stem from finally getting a diagnosis.   I’m 44 and live in the UK. I [...]

Dear Ehlers-Danlos Syndrome, I thought you had me. I really did. You gradually crept uninvited into my life, OUR lives. You took up my time, my energy, and hid from all my doctors. You made them [...]

When I first received my Marfan Syndrome diagnosis many years ago, I felt like I had been given a death sentence. No word of a lie, I thought the doctor was trying to tell me I was about to die. [...]

There is so much confusion in our community about hypermobility diagnoses following the release of new criteria in March 2017. Is it HSD, JHS, hEDS… which is it? Here’s a little [...]

When you live every day with a chronic condition, it’s easy to forget that you are not your diagnosis.   Your diagnosis does not define you.   It’s very easy to get caught [...]

Talking about hiding or displaying your condition may seem like a somewhat controversial topic to those who are deeply embedded in the hypermobility / spoonie / zebra / chronic illness [...]

I was on a business-related Facebook forum recently, and the owner of the forum posted about her latest in a string of many illnesses and injuries. Having seen her in videos and photographs, I [...]