Friedreich's ataxia - a story of living with the disease

The diagnosis of Friedreich's ataxia is a moment that stays in the patient's memory forever. One brother recalls: "The diagnosis was made on my 16th birthday. On the other hand, the first symptoms appeared around the age of 10." At the time, the symptoms were still mild and may have seemed like something temporary. Unfortunately, they began to worsen over time.

"I was in the third year of junior high school at the time. It was additionally the period of middle school exams, school selection. For me, back then, the disease was like something temporary, because the symptoms were not yet strong. It was only after the middle school results showed up and I chose a school that I started to worry about it more," he adds.

Living with the disease

The brothers describe how Friedreich's ataxia affected them at different stages of their lives. When they were still in elementary school at an early age, they had no major health problems. However, at around age 10, the first problems appeared. As the years went by, the situation became more and more difficult. "In high school, the first nudges from classmates began regarding the fact that we were taking steps strangely," recalls one of the brothers.

Although the symptoms were becoming more apparent, the younger years allowed for some activities, such as sports. "I used to go to karate. And even my coach suggested that I hunch over," he adds. But as time went on, the condition worsened, affecting life decisions about the future. "When the diagnosis came from Warsaw that I had ataxia, I already knew that I would not go to a uniform school. I was still considering a technical school at the time, but when it turned out that it could be worse, I also gave up on technical school."

Everyday life with ataxia

Life with Friedreich's ataxia is different from life for most. The patient's daily reality is subordinated to rehabilitation, which is the only method available to slow the progression of the disease and maintain physical fitness. "Our life certainly looks different from the rest of society. First of all, I have to do a lot of rehabilitation. Since I am still studying, I have to balance rehabilitation with my studies. During the holiday season, it's about 10 hours a week of rehabilitation. During the study period, about 5-6 hours," says one of the brothers.

Hope in a new drug

The story of living with Friedreich's Ataxia is a tale of struggle, perseverance and hope. Kacper and Karol, twins who are struggling with the disease, show the importance of family support, determination and hope for a better tomorrow. And they did - recently there was hope for change. For the first drug that stops the progression of the disease has been launched. For the mother of twins - this news is a miracle.