My husband has EDS and after many symptoms, diagnoses and years of torturous pain, he got the correct definition of his condition. He suffers so much with so little complaining and I honestly have no clue how he does it; I would have been screaming down the A & E department until they gave me a permanent Morphine drip!!
Recently a neighbour started acting aggressive with my husband; he said he was watching him as he thought he was a benefit cheat. EDS has only just started to be recognised by doctors, so people shouldn't judge those they know nothing about. Yes my husband does sometimes walk a short distance without his stick - but it is extremely painful. Yes, he does do a lot of DIY but he has many aids and adaptations which he has modified to allow him to do that which most people take for granted. The fact that he keeps going at all is a wonder to me - let alone getting his degree, decorating his house (no matter how slowly or painfully), and helping me with our 2 boys. We live in fear that our children will develop the syndrome. After seeing what my husband goes through, I don't think I could bear it.
Now that EDS is beginning to be more recognised, I hope that there is hope for the future. Medics need to be investigating the disease to ease the suffering of lots of people - many of them unaware of what it is that is causing all of the pain and distressing symptoms. I am a writer and I am currently writing a novel with an EDS sufferer as the protagonist. Anything anyone can do to raise awareness is a step in the right direction! Kelw Cochrane.