Treena Jones prays daily for one specific development in the treatment of Sarcoidosis. “I pray that there is never another girl who looks up at her doctor and watches him dust off his hands in front of her and say, ‘I don’ t know what I can do for you,’” she said.
Diagnosed with Sarcoidosis in 2007 when she was 37, Treena encountered doctor after doctor who didn’ t understand her disease. For years, her symptoms were minor so she simply coped with the lack of medical experts.
In 2014, however, Treena began experiencing persistent and often crippling pain in her side. Testing revealed that lymph nodes all over her body were inflamed. Fearing the cause was lymphoma, Treena’s primary care doctor referred her to an oncologist. The oncologists’ tests, however, ruled out lymphoma. And even though the tests showedthat a swollen spleen and malfunctioning endocrine system were the source of Treena’s pain, staff at the oncologist’s office suggested the Sarcoidosis patient consult a pulmonologist.
In her last discussion with the oncologist, “I said you’ ve got to help me. He literally put his hands together like somebody who is done with something, and said, ‘I can’ t help you.’ I left his office balling. I was still in pain,” Treena said. “You can get ping ponged between doctors and sometimes you get to the point where you are so tired that you just want to crawl in bed and cry because you don’ t have the help you need.”
Getting into a Sarcoidosis clinic, Treena said, is extremely difficult in part because sarcoidosis clinics are rare and in part because they require all consulted physicians to send all relevant medical notes and test results directly to the clinic. Many doctors’ offices don’ t readily comply with those requests.
Treena has managed her care largely by educating herself about Sarcoidosis, connecting with several online groups of Sarcoidosis patients and sharing key information with her primary care doctor. That research, she said, has helped her avoid some problems, such as negative side effects of commonly prescribed steroids.
With Sarcoidosis impacting her spleen, lymph nodes, endocrine system, esophagus and the exterior of her lungs, Treena manages her symptoms with minimal drugs and manages to care for her elderly mother. Although she admits that some days, she can’ t handle those activities.
“I pray that the Sarcoidosis doesn’ t rear up again because I don’ t know where I would get medical help,” she said.