“Having ataxia is like living with a ticking time bomb, but when I wake up still being able to walk, I only feel gratitude.” – Talluah - Ataxia UK

“Having ataxia is like living with a ticking time bomb, but when I wake up still being able to walk, I only feel gratitude.” – Talluah

Post Published: July 5, 2023
Tallulah shared her and her friend Marina’s story with BBC Mundo, and she has kindly shared this with us. Here is the translated version!
It all started with a funny walk. People laughed at me or asked if I—at 14—was drunk. I wasn’t.

In the following years I began to notice other peculiarities. My hands began to shake, and writing became more and more difficult. The doctors couldn’t give me any answers, and often hinted that I was exaggerating. It was eight years before I was referred to the hospital’s neurology department. My symptoms were getting worse, but despite that, I wasn’t prepared to hear what was to come.

You have a very rare neurological condition called ataxia,” the doctor told me. This is an umbrella term that encompasses a group of disorders that affect coordination, balance and speech, and whose symptoms and severity vary according to the type of ataxia in question. One in 50,000 people has ataxia. Mine is called AOA2, which affects roughly 3 in a million. I couldn’t understand what the doctor was telling me. How was this happening? Why me? I still wake up hoping that the last 6 years since I had that conversation were figments of my imagination, some strange dream to warn me not to take anything for granted. I could never throw and catch a ball, I could never ride a bike, I was just awful at sports in general; but my unconscious bias told me that this was because I was still a child, not because I had a rare neurological condition.

Although traveling with a disability can sometimes be difficult, Tallulah has fulfilled her dream of traveling to Thailand, Singapore and the Dominican Republic.

Sometimes I feel like my life is a ticking time bomb, unpredictable and erratic. I can’t predict how I’m going to feel each day, if my fatigue is going to be worse than the day before, or if my brain fog will make me more unstable. But every day when I wake up still able to walk, I only feel gratitude. Having a rare disease is all-consuming, it’s a roller coaster that I can’t get off even if I want to.

What exactly is ataxia?

Ataxia is a neurological condition that affects the cerebellum, also known as the small brain. Although small, the cerebellum is very important, as it controls basic human functions, such as balance, coordination, speech, and eye movement.

The symptoms of ataxia can develop at any age and can be caused by various reasons. You can, for example, develop ataxia from head injuries, viral infections, drug or alcohol abuse or as a result of defective genes inherited from parents.

There are many types of ataxia, but the NHS divides it into three general categories:

  • Acquired ataxia: where symptoms develop as a result of trauma, stroke, multiple sclerosis, brain tumour, or other problems that damage the brain or nervous system.
  • Idiopathic late cerebellar ataxia (ILOCA), in which the brain is progressively damaged for unknown reasons.
  • Hereditary ataxia: where symptoms develop slowly over time and are caused by genetic faults (the most common within this group is Friedreich’s).

The symptoms of AOA2 ataxia, which is hereditary and the one I suffer from, tend to appear anytime between early and late adolescence.

During this time balance and coordination begin to deteriorate. Those affected may also experience involuntary movements and tremors.

In addition to the physical symptoms, there are other invisible and often less tangible symptoms such as fatigue and brain fog. These symptoms are just as severe and can exacerbate physical ailments.

Due to the rare nature of AOA2, there is not much research compared to other, more common ataxias. A cure for AOA2 is my dream, but so far, my prayers have not been answered.

Marina’s story

On February 28, 2023, a breakthrough in medical research occurred: the U.S. Food and Drug Administration approved the first drug to treat Friedriech’s ataxia, called omaveloxolone.

This drug acts on the cellular response to oxidative stress, improving cell function and reducing inflammation. Although for now its use is only approved in the US, the news has brought hope for those affected by Friedriech’s ataxia and their families.

Tallulah (left) and Marina suffer from ataxia, but not the same type.

Marina is my friend. She lives in Spain, where she works as a doctor and has a research scholarship to do a PhD in the field of neurosciences. She also has Friedriech’s ataxia.

“My symptoms started after wearing the brace I wore for scoliosis for two years,” she tells me.

“I had always been very agile, but suddenly it didn’t feel natural to run, crouch, go down stairs… And I didn’t understand why. I was deceiving myself a little bit by saying that it was a consequence of wearing the brace for so long and not having done much physical activity.”

“I remember signing up for classes like spinning with my sister, who had always been clumsier than me, and I couldn’t keep up or stand up on the bike, and she could. I remember coming home that day and crying,” she recalls.

Marina’s diagnosis came when she was 19, when she consulted a neurologist on the recommendation of her professor of medical practice, who noticed her lack of reflexes when teaching her to examine them in others.

“Although I knew that what was happening to me was not normal, I thought that the neurologist was going to give me a pill and I was going to go back to being like before, to be able to run down the stairs, jump, etc. But she told me it would most likely be Friedreich’s ataxia. I had never heard it before and when I asked him what it was, he said: “the good thing is that it does not affect the head,'”

“I didn’t understand it at the time. But when I got to college and looked up the term online, I was shocked: I had all the symptoms that appeared there, including heart problems. It was one of the worst days of my life,” she says.

However, Marina is a contagiously positive person and is hopeful for the future.

Marina says that, in a sense, receiving her diagnosis was a relief.

“Then I changed the way I looked at things. I resumed the swimming I did as a child, I continued with athletics, although at first I wanted to quit, and the diagnosis relieved me in the sense that I could already give an explanation to what was happening to me. ”

“I have been getting worse over the years and when I had completely lost hope of having a half-normal life, they approved a treatment for the first time.”

“And although there is still time for them to bring it to Spain and we will have to fight for it to be financed, it is a great hope,” says Marina.

Rare diseases and grief

When I’m asked how it feels to have a degenerative condition, I find that describing it as a grieving process perfectly encapsulates how I feel. Slowly losing the ability to do the things you once did naturally is heartbreaking.

Swimming with dolphins was on Tallulah’s bucket list.

Five years ago, I could carry a cup of tea in my hands. I could also write, I could get up without being plagued with anxiety and apprehension for fear of falling.

Having a rare disease carries a huge emotional toll, it’s not just the pain and frustration of losing parts of your old self, but also grieving for the future you once planned, the hopes and dreams you once had.

I have traveled to many places since my diagnosis, which has given me confidence and optimism. I have been learning to adapt to this life that I never saw coming.

Last year I went to the Dominican Republic, where I was able to fulfill a dream on my bucket list: swimming with dolphins. This year I went to Singapore and Thailand.

Traveling with a disability is not always easy. The physical and social barriers are often too many.

But six years later, I’m coming to terms with the fact that my illness doesn’t define everything, that there are still ways to enjoy things, even if it’s slightly different than I imagined. And I’m accepting that I’m going to need help, to recognize my fatigue and, above all, not to feel ashamed when I just can’t do something.

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