For 13 years, Ida Hull struggled to breath.
The condition prompted periodic doctor visits, prescriptions of prednisone, one unexpected surgery and a stint of living at the end of a 50-foot hose connected to a five-foot oxygen tank. But if Ida ever heard the word Sarcoidosis, she never repeated it.
Instead the military officer’s wife and mother of three, “did the mom thing and said don’t worry about me,” said Sean Hull, her youngest son. She regarded the breathing issue as something that couldn’t be helped or explained.
A survivor of a rare form of cancer and a Sarcoidosis patient whose symptoms once deteriorated so severely that she was placed in hospice care, Cascenta Whyte has become a fierce advocate for her own health.
Cascenta’s symptoms began to surface shortly after she had a minor surgery at age 27. She initially dismissed the bouts of vertigo as a possible after effect of the anesthetic. But over the next month, her condition deteriorated rapidly. She lost the ability to control the directions that her eyes pointed, needed to cling to walls in order to walk, experienced asthma attacks and began to lose her ability to spell. Multiple trips to the hospital produced no explanation.
For nearly 18 years, Heidi Junk searched for an explanation of her sporadic and bizarre medical episodes. Since her early twenties, she had experienced periods of “electric bullets” shooting down her spine, odd tingling in her arms or legs, decreased hearing in one ear, localized pain, compromised balance and one baffling episode when one hand ballooned so that “it looked like a cartoon hand, the Hamburger Helper hand.”
Doctors thought the symptoms might be caused by MS, but multiple tests failed to find any sign of the disease.
The periodic swollen ankles were baffling. John Thomas, a cargo logistics specialist at Baltimore-Washington International Airport, could never remember twisting or injuring his feet. Yet every now and then an ankle would inexplicably swell.
Thomas dismissed it as an odd irritant until one day in December 2012 when joints all over his body – feet, legs, hips, hands – suddenly swelled. With some joints five times their normal size and a sense of exhaustion overwhelming him, the 37 year old headed to the emergency room. Over the next six days, a stream of doctors proposed possible diagnoses – including rheumatoid arthritis, tuberculosis and lime disease – while a string of tests disproved every theory. Finally, a doctor advised him that x-rays had revealed masses in his lungs and the cause was likely late-stage lymphoma.
“They literally started giving my wife pamphlets on how to deal with the death of a loved one and how to care for a terminally ill loved one,” John said.
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.