My Flexible Family

We are a family full of bendy people!! Being bendy is not such a bad thing - except when it's due to a condition called Joint Hypermobility Syndrome. The bendyness is due to faulty collagen, the stuff that gives our soft tissue structure. Both my husband and daughter suffer from this condition and both my boys are hypermobile but show no symptoms yet!  Right now Rhiannon has constant pain in her legs and feet, frequent dislocations of different joints including her hips and shoulders (which can be very painful), scoliosis of her spine, extreme movement in all her joints and her whole spine, extreme fatigue from her body trying to hold itself together also her pelvic floor is not strong enough for her to gain control over her flow of urine, her fingers are so bendy she can't grasp tools, cutlery and pencils properly and she finds it difficult to breath lying down and so sleeps sitting up. Treatment is difficult to find since there are so few medical professionals that know anything about this condition and how to help those suffering from it. At present there is no cure and Drs cannot tell us how bad her symptoms will become, what or when new symptons will appear and whether any treatment that we can access will work.What we are trying to do is raise enough money to fund my daughters treatment at a specalist clinic and to buy her equipment that will help minimise her pain and help her to stay mobile, healthy and independent for as long as possible. We need your help to do this!!

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