The aim of this PhD study is to explore the relationship between quality of life and social support for adults living with rare genetic skin conditions.
International Ataxia Awareness Day (IAAD) is on September 25 of each year. It is a coordinated effort from individuals and Ataxia organisations around the world to help shed light on this rare disease. Ataxia could be the most serious condition you have never heard of.
Hi, I’m Meg – a 31 year old with a rare disease called Spinocerebellar Ataxia – Type 1.
Blog author, Becky Smith, writes about her personal experience with Lipodystrophy.
Our founder Alan Thomas (@ataxiaandme) met with John “JC” Colyer at the 9/11 memorial in New Jersey. It was a moving experience in a very emotional place.
Up until two months ago I had never heard of Ataxia or other rare diseases. As a third year English Literature and Creative Writing undergrad unless it was Shakespeare, I was oblivious. Out of chance I saw an advertisement on my university job board for a volunteer content writer for a charity called Ataxia & Me.
After 15 years of living with my rare disease Immune Thrombocytopenia (ITP) I can reflect upon plenty of incidents during that time. It has certainly been eventful, to say the least. I have jumped numerous fences and dived through more hoops than I care to remember.
Son Zoyeb Mohamed Zia has Ataxia and is currently working as an Assistant Professor.
My name is Darcy Marie. I enjoy the simple things, shopping, horseback riding, walking in the park. But today I’m going to share my story.
My story with Poland Syndrome started the day after my son was born, when I noticed his fingers were joined together.