When you have a rare disease like Friedreich ataxia (FA), which affects only 50,000 people in the United States, it is pretty easy to feel alone and isolated. Usually, the stigma of having the rare disease, the emotional consequences of dealing with the disease, and complications of the symptoms and its treatment can be enough to drive someone into isolation. But when your disease is very rare, it’s difficult to locate another someone who understands what you are going through.
A recent article on the Friedreich’s Ataxia News website points out how relationships with other patients are important. It discusses how social media plays a critical role in building communities around patients, family members and caregivers of those who have a rare disease like Friedreich ataxia.
Friedreich ataxia is a rare genetic disorder that usually manifests itself in childhood between the ages of 5 and 15. The first symptoms are usually walking difficulties that are not associated with trauma. Patients tend to have bad coordination as a result of the disease attacking the nervous system, particularly the area that is responsible for balance and coordination. The disease generally will spread from the legs to the trunk and arms and involve other muscle groups. Scoliosis (a curving of the spine), slurred speech, vision problems, hearing impairment and cardiac abnormalities are all possible long-term symptoms of FA’s progression. To learn more about this rare disease, click here.
Although there’s a small patient population in the United States, patients with Friedreich Ataxia can now reach out via the internet, and more specifically social media, to connect with others who have the same disease. A readily accessible support group is very important to people who have the disease, and, naturally, want to extend their quality of life for as long as possible. Like many degenerative neurological disorders, FA doesn’t have a cure, or even an adequate treatment. Most assistance is focused on helping people adapt to the progressively debilitating changes to the body, and to improve and extend quality of life.
When faced with the emotional response to a rare disease diagnosis, a surplus of clinical information, and a need for practical advice, it makes sense people who want to learn more about FA benefit from social media. A community of patients and caregivers collaborating, sharing best practices and breaking news, and providing emotional support are important help people overcome the stress that a rare disease brings.
The following are some national social media sites that are used by the Friedreich ataxia community. There are many more private patient-based pages that will also lend a more personal face to the battle to treat and cure FA.