It took five years for teenager Seanie Nammock to be able to push the reality of her paralyzing genetic condition to the back of her mind and continue with everyday life.
But talking about the scarcity of funding for research to save the victims of Fibrodysplasia ossificans progressiva (FOP), also known as Stone Man Syndrome, still frustrates her, according to the Daily Mail.
Nammock, a 17-year-old from West London, discovered she had FOP when she was 12. Nammock had fallen in a trampoline accident, and her mother had to take her to the hospital because of a sore lump that developed on her shoulder where she fell.
FOP turns its victims muscles and tendons into bone when they are bumped and inflamed. But since only about 600 people have been diagnosed with the rare condition, research to fight the incurable disease lacks significant funding.
To raise money for research, Nammock’s family is planning to climb Mount Kilimanjaro, as part of a fundraising effort.
While Nammock awaits a cure for her condition, she is forced to cope with the limiting aspects of the disease.
Because of the extra bone that has grown on her shoulders, Nammock cannot reach her hands above her waist, leaving her unable to do simple tasks, like get dressed alone or wash her own hair.
Additionally, Nammock cannot receive biopsies or injections to learn more about her disease or quell the pain she experiences, as the probing would cause her body to grow even more bone and lock her joints in place.
The condition has hindered Nammock’s ability to complete many of the tasks she used to and participate in activities she used to enjoy, such as tag rugby and cooking.
But the teenager has not allowed the disease stop her from spending time with friends or excelling academically.
“I just crack on with things to be honest,” Nammock said. “There is no other option.”
Sources: The Daily Mail