Couple that with the fact that the pain medication Crow has needed meant he could not drive himself safely or legally the 60 miles to his dressing changes three or more days a week. That job fell to Puckett. Just doing the laundry is a full-time job when the condition's at its peak, Stuart says.
The good news to an unexpected disruption like an autoimmune disease, she adds, is most people don't have their entire lives collapse, although some do. Many get pemphigus under control in three to six months. Zone predicts Crow's pemphigus, because of its severity, will take much longer. And it's a condition prone to recurrences called "flares."
Because skin diseases are often right out there for the world to see, the sufferer has to deal with public reaction and, too often, ignorance, Stuart says. People think it's contagious. It's not. Or they think they're seeing something they're not, such as AIDS. They may stare or say rude and thoughtless things.
"All public interaction is a trauma," Stuart notes, sometimes for the entire family.
There are other little sorrows, as well. Stuart speaks of mothers who can't kiss their babies for fear their lips will burst open.
Just as brutal is the fact that when the condition strikes someone who is older — the most common scenario — the caregiver is apt to be elderly as well. It's a hard task to handle the physical side of the disease and make some complicated decisions, too, when you are also frail.
Looking for a cure
Stuart, an attorney, sits on a committee involving rare diseases for the American Association of Dermatology. It's the same story across rare diseases, she says: "No research and no interest in drug development." There aren't enough potential patients to woo drug manufacturers to invest their resources. And Food and Drug Administration efforts to encourage orphan drug development have helped, but not enough. She thinks the search for a treatment will pick up as links between orphan diseases and the ways in which they are similar bring hope that more than one disease will respond to the same treatment. It hasn't happened yet for pemphigus. Still, pemphigus is a lucky target in one way, because it affects a single organ — and a big one at that: skin.
So foundations pitch in money they raise to promote research, and family members like Tina Puckett sometimes charge expenses on credit cards and cross their fingers they can deal with the high cost when the crisis is over.
Crow and Puckett are finally beginning to feel hopeful. They can do most of the dressing changes, a tedious and painful process that is vital to his prognosis, themselves. Their visits to the doctor and the long drive to Salt Lake are weekly now, not nearly daily. The drive to the infusion center for a six-hour drip only happens monthly now.
And Crow finally feels well enough to be a little bored. That happens to beat feeling like your body is on fire, he says.
Autoimmune disease marked by painful blisters and erosions in the mouth and elsewhere.
Can affect anyone, but most common among older people and those of Mediterranean or Jewish descent.
Severe cases are managed like burns. Primary dangers are infection and dehydration; 5-15 percent mortality. With care, most cases become chronic.
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