Patient with Rare Diseases Accesses Distant Care
Clarice's Challenges with Rare Diseases
Clarice has been dealing with a rare disease, in some form or another, for as long as she can remember. “It’s been a difficult journey,” said Clarice.
Doctor's are challenged for answers
Clarice’s doctors thought she had Marfan syndrome, which is a a rare disease that affects connective tissues. She had many of the disease’s symptoms. But when they looked deeper into her case, they realized she didn’t have the genetic markers for it.
At this point, the doctors had more questions than answers. They referred Clarice to Johns Hopkins, in hopes that she could get an expert opinion. From there, she could figure out what steps to take to live the healthiest life possible.
While this was a good first step, problems remained. Clarice lives more than 430 miles away from Baltimore, and that’s just going one way. Driving would be tiring and time-consuming. Flying would be too expensive. How would Clarice get to Johns Hopkins?
Aid from Angel Flight Mid-Atlantic
At a critical point, Clarice found out about Angel Flight Mid-Atlantic (a program of Mercy Medical Angels). Angel Flight Mid-Atlantic's volunteer pilots provided free flights to and from Johns Hopkins.
Clarice said, “My flights were great. I’m so grateful to the flight coordinators and the skilled pilots. Everyone is so personable and kind.”
When she got to Johns Hopkins, Clarice saw a team of specialists. They recognized Clarice’s health problems may be stemming from an unknown condition. Clarice, rather than despairing, holds high hopes: “We might be about to make history!”
"I Feel Hopeful..."
Clarice’s challenges haven’t come to an end. But she knows that Angel Flight Mid-Atlantic will continue to help her.
“I feel hopeful for the first time in many, many years,” said Clarice. “Angel Flight Mid-Atlantic made all of this possible!”
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