[p]Ectodermal Dysplasia (EDS) is a rare genetic disorder that I have lived with for 50 years. [/p][p]My symptoms include a lack of teeth as well as sparse hair, poorly formed nails and lack of sweat glands which means I can’t control my body temperature, which can be dangerous. [/p][p]I am not as seriously affected as others, but it has impacted my day to day life for years. At primary school I was bullied because I was different to everyone else I had few teeth, thin hair. When I overheated I couldn’t concentrate and teachers thought I was disruptive in class.[/p][p]I felt self conscious growing up, this has continued into my adult life. When my parents looked for help there was little to no knowledge of the condition and I was only referred to the dentist to deal with the lack of teeth.[/p][p]This condition is hereditary and one of my brothers, my children and now my grandson are all affected to varying degrees. We have X-linked EctoDermal Dysplasia which is one type out of more than 180 types of the rare genetic condition.[/p][p]I did not receive my diagnosis until I was 44 when my daughter was diagnosed and even when she did get referred The GP had never heard of the condition and we had to request to have the referral.[/p][p]I am running the London Marathon to raise as much as I can to help this small charity and to raise awareness of the condition so others don't have to endure what I went through as a child. [/p][p]The ED Society was set up to help people like me and my family understand more about this condition, to find specialist medical and dental help, and to provide financial support to buy things like wigs or portable air conditioning units. [/p][p]They are a small charity relying on donations and funding to continue to provide support. Anything you can spare will make a huge difference to the people living with EDS xx[/p][p][br][/p][p][br][/p][p][br][/p][p][br][/p][p][br][/p]
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