According to an article originally from WCPO Cincinnati, a woman with fibrodysplasia ossificans progressiva is filing a lawsuit against officials of Ohio’s Hamilton County. Jessica Scully, 57, alleges that the county has provided insufficient assistance for her condition through its Developmental Disabilities Service.
What is Fibrodysplasia Ossificans Progressiva?
Fibrodysplasia ossificans progressiva, or FOP, is an incredibly rare genetic disorder affecting about one person in every two million.
The disorder is caused by mutations to the ACVR1 gene, a gene involved in the growth and development of new bones. Muscles and connective tissue in patients with FOP will slowly be replaced with bone. This severely restricts motion and can cause problems with walking, speaking, and even breathing in serious cases. Damage to soft tissue can lead to inflammation and hastened development of extraskeletal bone.
There is no known cure for the disorder. Even surgery is ineffective, as it, like other soft tissue trauma, causes even more bone to form.
The nature of FOP and its movement-restricting implications gave rise to its grim moniker – “stone man syndrome.”
Jessica Scully
Jessica Scully was diagnosed with FOP when she was only three. Early childhood is when most cases of fibrodysplasia ossificans progressiva are first detected – typically, patients with the disorder are born with malformed big toes (this helps doctors distinguish between FOP and other bone problems). When she was 14 she underwent surgery to correct scoliosis of her spine – since then, she has been constrained to a wheelchair.
Despite her disadvantages, Jessica still went on to graduate from high school and the University of Cincinnati. She had to retire almost twenty years ago as her condition worsened.
Hamilton County Lawsuit
In 2009, Scully started to receive aid from Hamilton County’s DDS, and not long after began to run into conflict with the organization. She says they have failed to adequately equip her – experiencing numerous difficulties acquiring a suitable bed, wheelchair, and wheelchair lift for her van. Her current chair has exposed wiring and has trouble running in wet conditions.
Scully claims that the poor equipment causes her a great deal of discomfort, and has limited her mobility even further. She claims that the equipment problems have begun to impact her emotional health as well – considering suicide for the past several years she’s experienced the worst of her troubles.
The lawsuit names 13 individuals currently, some of whom are on the Hamilton County Board of Commissioners. Scully is seeking in excess of $100,000 in compensatory damages, as well as over $100,000 in additional punitive damages.
Lawyers for Hamilton County DDS reject any notion of wrongdoing on their part – countering that injuries and damages incurred by Scully were the result of her own wrongdoing or negligence.
Though the lawsuit is moving forward, it will be October of 2020 before the jury trial can begin. Despite her frustrations, Scully has expressed hopes that the lawsuit will put a spotlight on the difficulties that face thousands of people trying to receive disability services.
Do you think disability service agencies in the United States provide timely and adequate care for those who rely on them? Do lengthy court engagements detract from patients’ quality of life? Do you think lawsuits like this one are effective? Share your thoughts with Patient Worthy!
