Tallulah is 19 and has Ataxia with Oculomotor Apraxia Type 2 (AOA2), one of the rarest forms of ataxia. She tells us today about how long it took to receive a diagnosis – a full decade – and how the public misconstrue her condition as drunkenness.
Tallulah was in and out of hospital for over a decade before she was finally diagnosed in May this year. Doctors initially thought she might have had Bechet’s syndrome, with mouth causing her speech to slur. “I was going crazy because they just couldn’t tie down a diagnosis; after a decade, they still didn’t think it was serious”.
Why I fundraise
Once she was eventually diagnosed by a neurologist, she began to fundraise almost immediately. With support from her extensive family, Tallulah has been able to raise £6,400 for Ataxia UK so far, which will go towards ataxia research. She’s motivated by her desire to have children, and save them from what she has to deal with every day.
Tallulah has recently started studying an Undergraduate degree in ‘Education, Culture and Childhood’ at the University of Sheffield. As a student, Tallulah faces the challenge of persuading bouncers and the police on social nights out that she isn’t drunk. She hopes that by raising awareness of ataxia, she and Ataxia UK can educate others to avoid such situations.
As she writes on her fundraising profile, Tallulah is “fighting this condition every day. I stumble and trip over a lot, I have anxiety and panic attacks as I fear falling or making myself look stupid, I have severe fatigue as my body is in a permanent state of “fight or flight” so need to rest a lot, and my signature has been reduced to a simple TC, as my writing has deteriorated rapidly. I don’t want people to mistake me for being drunk because I wobble and slur my words.”
Otherwise, Tallulah’s transition into university has been fairly smooth. She has friends who, after lengthy explanations, have come to understand the condition and support her where they can; “the university has a good disability support service; they provide a taxi to take me to the campus;” Tallulah has also been able to get help for her exams, as she struggles with handwriting. She would like to work in a nursery in the future and hopes that she can contribute to making ataxia known and recognised throughout the world.