In her memoir “We Exist”, Tanita Allen tells of the difficulty she had in having her symptoms correctly diagnosed as Huntington’s Disease. Time and again, she was misdiagnosed because
Almost exactly 18 months after my diagnosis of suffering from Huntington’s Disease, I embarked on the journey to the European Huntington Conference in Belgium. The days in Blankenberge
Help 4 HD Live! is the first international radio program ever created for the Huntington's disease community. Help 4 HD Live! was the first radio show created specifically for the Huntington’s disease community. With thousands of international listers, we continue to deliver credible education, information, and resources to our global HD community, care providers, and peers.
Charlie, creator of You, Me and HD describes the blog: "You, Me and HD isn't just here to tell my story, I hope through speaking out will help me connect to others suffering as a result of HD. I hope this educates people and helps them look beyond the facts in font in front of them.. I also want a safe place anyone can come to and be heard especially those having to make the choice to be tested and coming to terms with their results and indeed their future."
Huntington’s disease has been steeped in secrecy and fear for generations, leaving people in the community without a voice. This book changes that. Twenty-six people from nine countries bravely share their personal stories about living in the shadows of this disease. By doing so they are saying: Here I am. I will not be kept silent
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