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Jeannie

Born Aug. 1958  |  Winter Springs, FL

Living with FOP 

It’s all about your attitude, and how you see life. I don’t
dwell on what I can’t do. I focus on what I want to do.”

- Jeannie

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Jeannie cuts right to the chase: “I can’t stand the rain and there’s an 80% chance of showers. We better go quick!” Her statement is accompanied by a smile that is both inviting and playful. Still, Jeannie means business. She grabs her handbag and phone and is out the door. “I learned that I can be direct with people who understand disability,” she says. “Others lack a certain level of comfort, but when you can tell that someone sees you just like anyone else, you don’t have to treat them differently. You can be yourself.”


The skies hold out for another hour, during which Jeannie sits patiently in her chair. “I’ve never liked being photographed,” she admits, “but when I heard about this project, I was honored to be a part of it.” What appears adamant about Jeannie begins to soften and within minutes, a stream of sun filters through thick tree cover and passes over her face. “I’m definitely a sun girl.” she says, glistening in the afternoon light.

 

Jeannie, who is featured in Carl Zimmer’s 2013 article in The Atlantic as “the girl who turned to bone” is one of the oldest survivors of fibrodysplasia ossificans progressiva (FOP). In addition to being one of the most rare genetic conditions affecting one in every two million people worldwide—FOP is one of the most debilitating. Its flare ups cause bone to form in muscles, tendons, ligaments and other connective tissues. As Jeannie’s life has progressed, so has the growth of rigid sheets of bone throughout her body, including bridges across her joints, restricting her movement and essentially, locking her in place. As devastating as this is, Jeannie says that many people have it worse than her. She feels glad that her hips are locked into a seated position. “Not all people with FOP are able to sit. I feel fortunate.”


With day-to-day activities, Jeannie requires quite a bit of help. Getting in and out of bed, showering, dressing, preparing food — most of these tasks are completed with the assistance of an in-home carer and her mother, Marie, who at 88, still helps her daughter everyday. Though her physical limitations do make her dependent, Jeannie’s abilities in terms of what she has achieved and continues to achieve remain as unhindered as her spirit.


“I am always ablebodied in my dreams,” Jeannie says from her home in Winter Springs, Florida. “I dream a lot. Big dreams, detailed dreams. But I never dream that I am
disabled.”


By 28, Jeannie’s condition had already progressed to the point where she was no longer able to use her left arm, walk or drive. “My body was completely locked,” she says, “but I had a dream to pursue.”


That dream was to start The International Fibrodysplasia Ossifican Progressiva Association (IFOPA), a nonprofit to fund research and support families with FOP. Though she had no idea what went into starting an organization at the time, with her degree in social work and all the ambition necessary to discover what was needed, Jeannie got to work.


She explains that her motivation behind starting IFOPA was not to find treatment for herself. She says, “I wanted there to be options for future generations of people with FOP. If there could be options, we needed to start somewhere.”


Now, 25 years later, the organization Jeannie started has successfully identified and connected hundreds of FOP patients across the world, weaving together a strong, tight-knit community. The organization has also helped fund a laboratory and center for research of FOP and related disorders at the University of Pennsylvania, where incredible headway on understanding the disease has been made.


In 2006, efforts led by UPenn’s Frederick Kaplan, MD and Eileen Shore, PhD, identified the exact gene where the mutation that causes FOP occurs. “That phone call was the greatest gift I have ever received in my lifetime,” reflects Jeannie. “I remember his words exactly, ‘We need you to come to Philadelphia, we’ve found the gene!’ That discovery laid the landscape for where we are today. It’s a very exciting time, especially for parents of children with FOP.”


Now, after two and a half decades of dedication to IFOPA, Jeannie has decided to retire. “It was my baby and passion for so long, and giving up that work is hard,” she says. “But my health has not been great and I could see that it was time to let go and concentrate on just doing what I like to do. The organization will go on without me. A new generation can take over now.”


Confident that her baby is in good hands, Jeannie has much more time now to do the simple things she enjoys, like going out to eat, going to the beach, and spending time with friends and family. “I don’t feel that FOP defines me as a person,” she says. “It has certainly changed me as a person. And I feel that starting the organization was God’s mission for my life. He led me in, and it’s something I’ve thoroughly enjoyed. But FOP was never the center point of my life nor my family’s.”


“It’s all about your attitude, and how you see life,” she continues. “I don’t dwell on what I can’t do. I focus on what I want to do. The FOP community is unique in that we are all very, very close. That was one of the main intentions for starting the organization—to end the isolation for people with FOP. And now we all know that there are a lot of amazing people out there. It is certainly a painful and life-changing disease. But everyone in our community knows how to keep moving on. Whatever the new norm is after the flare up you quickly adjust to it and move forward— however that changes you. Certainly we all have our moments of getting depressed about it. But our togetherness makes us strong, and we know how to persevere.”


The accomplishments of Jeannie’s outlook and career stand as an incredible inspiration within the FOP community and beyond. She is a testament that having a severely life-limiting condition need not prevent a person from experiencing, as Jeannie says, “a different life than most, but still, a wonderful life.”