Fort Worth jazz artist raising awareness of rare immune disorder sarcoidosis
FORT WORTH (CBSNewsTexas.com) – Fort Worth jazz musician Rachella Parks-Washington plays the flute, the clarinet, the saxophone and piano, but the tenor sax is her favorite.
"Because it's more like the human voice," explains Park-Washington.
Now, she's using her voice and her music to raise awareness of sarcoidosis – an immune disorder with symptoms so common that it is often misdiagnosed and under diagnosed. For years, she was told she was having panic attacks when she struggled to breathe.
"At one point, I couldn't remember music. I couldn't tell a C from an E. It's kind of like being an artist and all of a sudden you can't tell the difference between green and yellow," explains Parks-Washington. "They actually diagnosed me with neurologic sarcoidosis, which was one of the rarest forms."
Sarcoidosis occurs when a body's immune system goes into overdrive. The excessive lumps that form that damage organs, often the lungs, but even the heart and brain. Experts still don't know what triggers it. But, local doctors say it's important to know your own body and trust your instincts.
"It's not normal to have a cough. It's not normal to feel short of breath. It's not normal to have chest tightness, or chest pain," explains Andrew Miller, MD. Dr. Miller is a pulmonologist with Texas Health Harris Methodist Fort Worth and adds, "that's not part of aging."
Dr. Miller, who is also an Assistant Professor of Medicine at TCU School of Medicine, and the associate program director for the Internal Medicine Residency Program at Harris Methodist Hospital Fort Worth, says doctors and medical professionals are correct to look, first, for common reasons for common symptoms. But he says pay attention when those symptoms don't go away.
"Then it's not just appropriate, but the right thing to do, to say 'look, I appreciate what's been done so far. Is there a next step? Is there a specialist? Is there someone I should see?'"
Sarcoidosis has no cure. So Parks-Washington says that she just keep reinventing herself to stay close to the music she loves and she hopes her willingness to fight provides encouragement for others."
"When I couldn't play the saxophone, I got an instrument that was electric," she explains. She also continued to play the piano and compose music when her diminished lung capacity made it difficult to play. And while she doesn't minimize the challenges of the decades long journey, she does keep it in perspective.
"I just feel blessed," explains Parks-Washington. "And I feel like my story is not over...if I can play a note, and somebody can feel that note and that note can give somebody hope, that gives me hope."
Her eyes fill with tears as she goes on to explain, "I was kind of feeling down after this last surgery. But, I have purpose and it's never too late for purpose."
When asked why she feels so blessed, in spite of the diagnosis, she responded: "I'm thinking about the people that have died. I'm thinking about the people that had to have lung transplants. I'm thinking about the people that don't have a support system."
"I'm so thankful," she says again with a long, thoughtful pause. "So, it's not over. It's just different. But I'm still here."
