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Putting a face on rare, incurable diseases

When children are dying of rare diseases that few people are working to cure, a closer look is required — which is just what one committed artist is providing. Our Cover Story is reported by Jim Axelrod: His name is Sam Buck. And while his high-wattage-smile and infectious laugh may remind you of a favorite […] View page


Study indicates deconditioning doesn’t cause POTS, but has a cardiac trigger

A very small, yet enlightening medical commentary about Postural Orthostatic Tachycardia syndrome (POTS) has recently popped up. POTS is often -erroneously- put down to the result of deconditioning – i.e, not doing enough exercise. It’s one of the things that people with the condition (including me) find most upsetting, the thought – sometimes spoken, more […] View page


Kiwis plagued by Ehler-Danlos told it’s ‘all in the head’

It wasn’t the first time. A month earlier, it had come loose while he was playing cricket. Another time, he was out to dinner when he felt as if his jaw was falling out of place. The 18-year-old who was once an aspiring sportsman has Ehlers-Danlos syndrome. The condition is genetic, and could affect about […] View page


My Wife Had Ehlers-Danlos and Didn’t Know It

We were married for 41 years. You’d think after all of that time you would know everything there was to know about a person. I knew Carol as a loving wife who would do anything she could for the kids and the family. She was a social worker and very concerned about the comfort of […] View page


Detecting Higher Incidence of IBS Related Symptoms

An interesting kickstarter campaign that could help our community with our diet… We know that in the EDS community there seems to be a higher incidence of IBS related symptoms. One test that is commonly used in GI clinics is a hydrogen breath test to determine if you would benefit from the FODMAP diet. Could […] View page


Once bullied, she found a voice that blew away the rock pros

For most of the last decade, Livvie Forbes, 18, suffered from debilitating medical disorders that left her looking different than other children, and from attacks by school bullies that left her feeling hopeless. Her voice was silenced by sadness buried so deep within her that she was unaware it was her lifeline. Then, last year, […] View page