And until recently, people with rare diseases had little reason to hope this would change. Not only is there no drug to prescribe, but in many cases, scientists have little idea of the underlying cause of the disease. Once people do find out that they suffer from a rare disease, many discover that medicine cannot help them. Rare diseases frequently go undiagnosed, or misdiagnosed, for years. The symptoms of these diseases may differ, but the people who suffer from them share many experiences. More than 7,000 such diseases exist, afflicting a total of 25 million to 30 million Americans. A rare disease is defined as any condition affecting fewer than 200,000 patients in the United States. Peeper’s condition is extremely rare-but in that respect, she actually has a lot of company. Her right hand, resting on her wheelchair’s joystick, contained the only free-moving joint in her body. Bones had immobilized her neck, so she had to look at me with a sidelong gaze. Her face was almost entirely frozen she spoke by drawing her lower lip down and out to the sides. “It’s good to finally meet you,” she said when I walked in.
GIRLS WITH MUSCLE SKIRT IMAGE SKIN
I could make out some of the bones under the skin of her left arm: long, curved, extraneous. Her left hand was locked next to her right biceps. Her arms were folded, like those of a teacher who has run out of patience. Peeper sat in a hulking electric wheelchair tilted back at a 30-degree angle. A large ring in the shape of a black flower encircled one of her fingers. She was dressed in a narrow-waisted black skirt and a black-and-white striped blouse. Peeper founded the association 25 years ago, and remains its president. “They should just take me home and enjoy their time with me, because I would probably not live to be a teenager.” We were in Oviedo, Florida, in an office with a long, narrow sign that read The International Fibrodysplasia Ossificans Progressiva Association. “Basically, my parents were told there was nothing that could be done,” Peeper told me in October.
All they did say was that Peeper would not live long. The Mayo doctors didn’t tell Peeper’s parents that.
Bone by bone, the disease would lock her into stillness. Within a few years, she would begin to grow new bones that would stretch across her body, some fusing to her original skeleton. Peeper’s diagnosis meant that, over her lifetime, she would essentially develop a second skeleton. The name meant nothing to Peeper’s parents-unsurprising, given that it is one of the rarest diseases in the world. Peeper was 4 when the Mayo Clinic confirmed a diagnosis: she had a disorder known as fibrodysplasia ossificans progressiva (FOP). When Peeper’s mother noticed that the baby couldn’t open her mouth as wide as her sisters and brothers, she took her to the first of various doctors, seeking an explanation for her seemingly random assortment of symptoms. After a few days, the swelling vanished as quickly as it had arrived. Her parents didn’t know why: she hadn’t hit her head on the side of her crib she didn’t have an infected scratch.
Two months later, a bulbous swelling appeared on the back of Peeper’s head. Doctors fitted her with toe braces and sent her home. When Jeannie Peeper was born in 1958, there was only one thing amiss: her big toes were short and crooked.
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