If you live in Connecticut, and happen to have a rare disease, efforts are being made to help make your voice heard.
When you’re one in a very few, it can often feel like you are a lone voice in the wilderness, and that nobody is listening because nobody can hear you. That’s about to change as legislators and medical experts come together on a task force to address this issue.
Take Jackie Stager, a 14-year-old who suffers from Ehlers-Danlos syndrome, a rare neurological condition that has six distinct types, all involving connective tissue. Each type represents a different abnormality in the person’s collagen, the glue that holds the joints together.
Jackie was forced to give up ballet because of the pain caused by her Ehlers-Danlos syndrome, especially in her knees, but her mother also said that Jackie’s shoulders were prone to popping out of the shoulder joints.
Over a two-year period, Jackie went to the emergency room eight times, but unfortunately, few doctors understand Ehlers-Danlos, and the lack of treatment has led to other areas of her body being enveloped in pain.
The task force was created to make recommendations regarding legislation to the General Assembly in Connecticut to assist Jackie and others like her. It is the brain child of Rep. John Hampton, who was contacted by a constituent who had a rare disease that her insurance wouldn’t cover.
If the task force, which Hampton considers a work in progress, is successful, it may lead to an elevated awareness for rare diseases, funding for research, and better insurance coverage for treating patients.
