The conference was really good. It was great to see some health professionals that knew what they were talking about. There were a few that didnt have much experience but at least they had an interest in it. I now have an idea of where to start and it was great to meet people & hear presentations from people with similar stories. I think we all shed a tear at the stories of years of not being believed, of going from one doctor to another, being told there is nothing wrong just because they didnt know about connective tissue disorders. Ive had massive pain & sublaxes for as long as I can remember. Ive been passing out due to blood pressure dropping since I was 13. Ive had terrible migraines most days since I was 16. The fatigue is so bad I cant get out of bed some days. But doctors have told me to do more washing up, to lose weight. To finally have something that explains almost all of my symptoms. There is no cure but to be believed and to know there are some things I can do to help, that makes a huge difference. I hope more doctors become aware of connective tissue disorders and more people specialise in treating them. My hypermobility is fairly mild compared to a lot of people but the pain, fatigue, migraines, fainting and skin fragility is debilitating.
Posted on: Thu, 24 Jul 2014 12:12:46 +0000
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