When Dealing With Friedreich’s Ataxia, Relationships Are Key

According to a story from Rare Revolution Magazine, Georgia Hart was first diagnosed with Friedrich’s ataxia when she was 15 years old. Since then, living with this rare disease has been a challenge, but the support of her friends has helped make things easier.
Friedreich’s ataxia (FA) is a rare genetic disease that progressively damages the body’s nervous system. The first symptom of this disease is often an abnormal gait. Other symptoms include muscle weakness in the limbs, vision and hearing problems, coordination loss, scoliosis, and slurred speech. It can also lead to more serious health issues like diabetes and heart disease. The nervous system structures in the spinal cord receives the most damage, affecting control of the arms and legs. Patients with Friedreich’s ataxia may need surgery and walking assistance. To learn more about this disorder, click here.

Before she started getting sick, Georgia had made a lot of friends at her school. The social environment at schools can often be an intimidating place, where doing anything to stand out from the crowd could mean getting mocked. So, like most people her age, Georgia was doing what she could to fit in at school. Naturally, her diagnosis felt like a potentially disastrous development for her social life. Thankfully, getting FRDA did not ruin her social life at all; her friends have been consistent and supportive about her disorder, and in fact, Georgia says that getting FRDA helped strengthen her friendships.

In order to help support her medical costs, Georgia raised a total of £30,000, and a lot of it came from her friends. Kate, who is Georgia’s best friend, said that the friend group has learned to take into account her disease when they decide what to do. Now, this is little more than second nature for the group of friends. Last year, Georgia was not doing well and had to be sent to the hospital. Almost immediately, her friends came back home from university and surprised her at the hospital with gifts.

Isolation and loneliness can be a major problem for people with rare diseases like Friedreich’s ataxia. It can be a really big challenge to try to handle all of the stress that can come with living with a rare disease, and having close friends that are understanding and willing to listen can make all the difference.

Share this post