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pikachupaul_leeds is raising money for Ehlers-Danlos Support UK

Ehlers Danlos Syndrome Research & Support for Leeds

Event dates: 4th February 2011 – 2nd March 2012

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My story

Ehlers Danlos Syndrome and other rare Genetic Diseases are the taboo of the Primary Care Trusts and GP Surgery campaigns and coffee mornings. They may be new words and new medical search topics but the symptoms and battles have existed for years. The constant battle for those who just want a name for how they feel is worse than the symptoms, for me it was anyway. Rare diseases are deemed rare in most cases simply because sufferers are misdiagnosed with depression, OCD and other Personality and Neurological diseases more often before it is too late as in EDS Type IV the vascular type which is the most severe and the average age of death is 48 years old, and without warning from severe cardiac defects. The signs and symptoms are always there, before any major health issues arise. Don't be scared to ask or to question your GP or Nurse. To gain knowledge is good but to share it is even better. Be a geek a nerd a hypochondriac or weirdo. Google it large, stalk Jeeves and Wiki with friends. It might save your life one day, or one of your nearest and dearest.


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pikachupaul_leeds is fundraising for

Ehlers-Danlos Support UK

Charity number: 1157027

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