Sophia Cucchiara, 26, warns people not to ignore a long-running “stomach bug” or they may end up like her: left in a wheelchair for the rest of her life.
During the summer of 2018, Cucchiara believed that she had come down with a particularly bad stomach virus. She was constantly nauseated, had a high fever, and dropped weight rapidly. A nursing student, she thought she was merely sick with a stomach ailment so she soldiered on.
But then she noticed that her lymph nodes were swollen, and she had strange pain in her neck and her joints, which prompted her to see a doctor. Three more years went by as medicos tried to figure out what was wrong with her. Cucchiara did not get an answer until 2021, and it was not a pleasant one. The woman was diagnosed with a rare form of inflammatory arthritis called Still’s disease.
Cucchiara, who lives in Germany, said she was scared and constantly anxious not understanding “what was wrong with my body.” She said she second-guessed herself and managed to convince herself that she wasn’t truly sick, but perhaps just overly sensitive. She said she couldn’t trust her own symptoms and reactions because no doctor could find anything wrong with her initially.
At one point, doctors though she might have had lymphoma, a highly fatal cancer of the immune system. An oncologist even took a biopsy and talked to Cucchiara about the possibility of needing to retrieve some of her eggs for storage if they had to do chemotherapy. When the cancer results came back negative, she said, she was shocked.
By 2021 she was in so much pain that she dropped out of school and stopped working. That’s when she got a referral to a rheumatologist who eventually figured out she had Still’s disease. It was a relief to have a diagnosis, she said, so she could be sure she was not “just imagining my illness.”
Still’s disease is quite rare, affecting only one in 100,000 people. In the UK, for example, there are only 800 known cases.
The condition is an immune problem in which the body inflames itself constantly instead of just when there is an injury or a sickness. Still’s symptoms include joint pain, fever, and a distinctive salmon-colored rash that comes on quickly goes away rapidly.
There is no cure for the disease, but symptoms can be managed with anti-inflammatory drugs and injections of steroids.
There are several medications that can help manage the symptoms of Still’s, including non-steroidal anti-inflammatory drugs (NSAIDs), disease-modifying anti-rheumatic drugs, steroids and biological therapies.
Cucchiara said the pain is still so unbearable that she has to use a wheelchair despite the pills and pain-relieving skin patches she uses daily.
