“Never tickle a sleeping dragon,” JK Rowling famously warns. But I’ve heard better dragon advice. People who live with Still’s disease – men, women, children – experience their own type of dragon every day. It comes as a rare form of arthritis and is characterized by inflammatory symptoms, such as rashes, joint pain, and daily fevers that can exceed 104°F.
Still’s disease is rare, is difficult to diagnose, and can severely impact a person’s life. Thanks to the power of the internet, I was able to witness the story of one woman with Still’s disease. On top of daily fever, chills, and fatigue, she described her consistent nighttime pains as someone hitting her joints with a hammer. Her diagnostic journey was “a slow, painful process.”
After countless doctor appointments and hospital visits, this patient with Still’s disease took matters into her own hands. Although she only had the energy to browse the internet an hour each day, she eventually came across Adult Onset Still’s Disease (AOSD), a condition that perfectly matched her symptoms. After combating numerous disbelieving healthcare practitioners, she found a rheumatologist who confirmed her diagnosis.
Unfortunately, for many, Still’s is a challenging diagnostic journey. By its very nature, a rare disease like Still’s is one that doctors have less experience and training to find. Doctors and patients lack information and resources to find the needle in the haystack. On top of severely debilitating physical symptoms, patients face the mental burden of living with a rare and undiagnosed condition, which can lead to feelings of isolation and hopelessness.
Let’s help more people with Still’s disease get a diagnosis sooner. Awareness of the disease and its symptoms are critical. Let’s put the freeze on Still’s disease!
We’re freezing dragons to heat up hope for a world where people with Still’s disease no longer suffer—and you can help. By sharing our video and spreading awareness of Still’s disease, you could help decrease the challenges of the next diagnostic journey. By spreading the word, you can give people with Still’s disease hope, reassurance, and the firepower to fight back against their Still’s disease dragon.
To JK Rowling’s dragon advice, I counter with a more fitting quote, “Fairy tales are more than true: not because they tell us dragons exist, but because they tell us that dragons can be beaten.” —GK Chesterton