Media Ambassdor, Lali Cardozo, talks about being a mother with ataxia to Calypso. Calypso is my daughter; she was seven pounds and two ounces when she was born at 11.45pm on 17 October. She was a petite, average sized baby and there was nothing wrong with her. She was perfect; not too big, not too small. She had thick, black ringlets covering her head and a nose just …
Carol talks about her seven-year journey to an ataxia diagnosis, but the cause still remains a mystery. It started for me in the summer of 2014. We moved house and the first signs of ataxia appeared which I put down to tiredness and stress. In my madness, we also took on a rescue dog, a …
In part two of Adrian’s blog, he talks about his love of music and, despite the challenges of ataxia, his commitment to making music. I have loved music from a young age. I remember how even a song on the radio in the kitchen would captivate me as a child, I would almost zone out …
Ataxia is a big part of Tallulah Clark’s life – here she talks about the challenges around rare diseases. I’ve been staring at my screen aimlessly for the last half an hour, because truthfully today I don’t just want to write about my ataxia. Today is a fairly ok average day in my world and …
Rare Disease Day: The curse of the Invisible Illness Read More »
Dale Gardner, Media Ambassador for Ataxia UK, lives with Friedreich’s ataxia, but despite its challenges, he talks about how strong and proud he is. At 26 I had no symptoms or even knowledge of ataxia. That was until one day when I visited the cinema with friends. Afterwards, they dropped me off and as I walked to the front door, I turned …
In part one of Adrian’s story, he talks about early signs of ataxia and its affect on his career and life. In late 2016 I went to the doctor because my wife had noticed me losing my balance and tripping over a lot. The doctor had me perform several exercises and when it came to trying to …
Tim Wahl talks about the challenges that episodic ataxia has presented throughout his life. My life with episodic ataxia includes a long succession of medical specialists and a spectrum of diagnoses— “mild” epilepsy, migraine, vasovagal syncope, and hypoglycaemia. The one that took the prize was “anticipatory anxiety.” Ineffective medicines from anti-convulsive and anti-depressants to tranquillisers …
My name is Mari, I am 26 years old and have ataxia. I am a Media Ambassador for Ataxia UK and this is my first blog. Due to Covid-19 my family decided to have a break in the UK. We looked for somewhere that was fully accessible for me as I am a full-time wheelchair …
Martha has struggled with ataxia for over 30 years, here she tells us about her past careers. I’m Martha and I am the fourth generation with hereditary ataxia in my family. I have struggled with ataxia for over 30 years. Since I was a child I’ve always aspired to sing on Broadway (1956 – understudy …
Chris cared for his wife, Anne, who had Friedreich’s ataxia. Since her passing, Chris has written a book to share his experiences.
