While there are various interpretations of that biblical quote, the idea of those seven simple words should be engrained in our collective psyche. The same goes for the modern version: don’t judge a book by its cover. As a rule, we have no idea what that woman or that guy or those kids are going through as we encounter people in our daily lives.
Those afflicted with invisible disorders and diseases understand this all too well. From hemophilia and diabetes to fibromyalgia and autoimmune diseases such as Myasthenia Gravis, many people suffer alone, or simply amongst loved ones. On the surface, these men, women and children show no outward signs of a disorder; they appear to others like everyone else.
Hemophilia, a bleeding disorder that affects an estimated 20,000 people in the United States, is a prime example of a disorder that appears invisible on the outside, but requires regular treatments to properly clot blood and keep patients healthy and alive. While there may not be a cure, members of the bleeding disorders community can live long, healthy and productive lives.
Approximately 400 babies are born with hemophilia annually, or one in 5,000 births. Others develop the disorder through a spontaneous gene mutation.
“People with hemophilia may look physically fit, but they could be having an internal ankle bleed,” says Fran Haynes, executive director of the Winter Park-based Hemophilia Foundation of Greater Florida (HFGF). “Just because you can’t see it, doesn’t mean it does not exist.”
Sometimes, if there is extreme debilitation from a breakdown in the protective tissue inside a joint from an internal bleed, this can lead to limited movement, displaying outward signs of the disorder. Baby Boomers, who grew up in an age when hemophilia treatment was sketchy, may walk with a limp due to permanent joint damage caused by improper treatment. But for the most part, hemophilia is invisible.
The lack of knowledge associated with the disorder, its makeup, prognosis and treatment does cause a great deal of aggravation and frustration in the bleeding disorders community.
“There is a stigma that comes with having a blood disease,” says Samantha Nazario of Melbourne, whose 18-year-old son was diagnosed at Arnold Palmer Children’s Hospital with von Willebrand disease, a milder, more common blood clotting disorder, when he was 6. “I have to tell people, ‘no you can’t catch it.’”
Fran says because of the lack of knowledge about bleeding disorders in schools and the workplace, tool kits are available to those with hemophilia. For school-aged children, a kit provides a PowerPoint presentation for parents to show when meeting with school personnel to both educate, and help remove some of the stress and worry for both parents and teachers.
For those in the workplace, a toolkit aids in explaining the rights of an employee with a bleeding disorder, including disclosure of the disorder, insurance information and laws designed to protect such workers.
A Circle of Invisibility
Unfortunately, myths and misconceptions of hemophilia feed into the invisible disease narrative. Members of the bleeding disorders community tend to hide their disorder from all but close family and friends, electing to conceal the truth for fear of isolation or judgement. Sometimes it is just easier to live day-to-day void of stigmatized rhetoric and ignorance. The invisible disease, indeed, becomes more invisible.
“It is a hard disorder to explain,” Fran notes, “and it gets exhausting to explain it over and over.”
Part of the HFGF’s mission is to educate and advocate on behalf of those with bleeding disorders. The organization is built on the premise of not only supporting patients and families with bleeding disorders, but enlightening the public and dispelling myths.
HFGF social worker Dina Richardson, LCSW, says because it is such a rare disease, most people have not been exposed to hemophilia, which perpetuates the frustration and invisibility. Nevertheless, some people with the disorder want the world to know.
“Either people wear it on their sleeve and are open about it, or they like the fact that people don’t know,” Dina says.
For those who want to talk about life with hemophilia, the Foundation has produced “Voices of HFGF,” real stories from real people to help better educate the masses. By telling their stories, those afflicted are helping to change the culture to one in which conclusions are based on knowledge, and judgements held for the educated.