A woman has revealed how she had to quit her job after being diagnosed with a rare type of early-onset arthritis.
When Sophia Cucchiara started suffering from frequent waves of nausea, coupled with intense fevers, alongside losing weight – she assumed a typical stomach bug had taken hold.
The 26-year-old, who was studying to become a nurse at the time, then noticed swollen lymph nodes in her neck and claims her doctor said it was due to stress.
In a bid to seek a second opinion, she visited another doctor and while there, she was diagnosed with Stills disease, a rare inflammatory form of arthritis, turning her world upside down.
“I was anxious, concerned and scared,” Sophia, from Cologne, Germany, told Need To Know.
“I was in lots of pain, but I had the support of my friends and family.
“They made the pain and fear a little less.
“I knew something was really wrong with me, and immediately, I was sent to the hospital, where they ran multiple tests, scans and blood work.
“I was told that I may have lymphoma and depending on the tests, I may need a biopsy taken.”
Sophia, who was convinced she had cancer, began preparing herself for the worst outcome.
She said: “The oncologist beforehand, was very convinced and only wanted the biopsy for formal reasons.
“She had even already informed me about the chemotherapy and egg retrieval.
“So I had already prepared myself and was very shocked that it wasn’t cancerous.”
Then, four weeks later, in September 2018, she underwent the biopsy – which came back clear.
While she was happy to learn it wasn’t cancer, she was frustrated not knowing the root cause of the issue and began questioning herself.
Sophia said: “Not knowing what was wrong with my body was the hardest part of this time.
“It wasn’t just frustrating, at some points I started to doubt myself.
“I convinced myself that I wasn’t ill at all and was just exaggerating and that everyone has these symptoms – I’m just sensitive.
“I could no longer trust myself and my perception because no one could figure out why I was feeling so bad.”
The former nursing student sadly had to quit her studies in a bid to focus on her health, where she was referred to a rheumatologist for further examination.
Due to her joint pain, she was treated for immune-related diseases, such as lupus, which had no success.
In 2021, she suffered another flare-up of a rash on her skin and daily fevers, and she was then diagnosed with her aforementioned condition.
While there is no cure, she’s happy to finally have an answer – but is hoping to raise awareness with her battle for future cases.
She said: “I was happy, I thought that now we know what it is, we can try and fix it.
“I was relieved, especially because I finally knew that I wasn’t just imagining my illness.
“After I had informed myself and also knew what treatment I was facing and that this disease is not curable, I was no longer so relieved.
“But rather shocked and disappointed.
“I’ve now got used to injecting myself every day, and I’ve come to terms with it that there is no cure.
“Some days it‘s really hard, on days when I have to cancel plans or appointments, on days when the pain is extra high and on days when I‘m in the hospital.
“I have pain in my joints, but also my muscles.
“And since the bladder involvement I also often have bladder cramps.
“I can’t say exactly what hurts the most because it often varies, it’s often hips, knees and wrists, but sometimes something completely different.
“I still have various tablets, I take 12 daily, and pain relieving patches.
“But I‘m proud that I’ve never given up.
“And I’m also proud that I try to educate people about chronic pain, invisible illnesses, disabilities and so on, so maybe my story has a purpose.
“Thanks to my wheelchair, I can go on vacations again, visit festivals and concerts and go on trips with friends.
“None of that was possible before.
“But I still need lots of breaks, I always have to plan carefully and take a nap every day, because otherwise everything is still too exhausting.”
Sophia, who is unable to work as a nurse due to her condition, has now completed her studies and will now teach other budding nurses in future.
She added: “I kept fighting and never gave up, and I won’t in the future either.
“I‘ve learned to listen to my body and set boundaries.”
“Only you know yourself best and can tell when something is wrong.
“It may be difficult, there will be times when you don’t want to go on, but always keep the good moments in mind, because they are always worth fighting for.”
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