A 26 year-old woman has revealed how she’s been left wheelchair bound and her life ‘destroyed’ after developing what she thought was a stomach bug.
In the summer of 2018, Sophia Cucchiara started suffering frequent waves of nausea, coupled with intense fevers, and lost a significant amount of weight.
The former student nurse thought little of it, assuming a stomach bug had taken hold.
But Ms Cucchaiara then developed swollen lymph nodes in her neck, joint pain and a rash, which prompted visits to several doctors in order to get to the bottom of her diagnosis.
It wasn’t until three years later, in September 2021, that an astute specialist would carry out the necassary tests to spot Still’s disease — a rare inflammatory form of arthritis.
Sophia Cucchiara thought she had all the classic signs of a stomach bug, but in fact it was the start of a 4 year battle for a correct diagnosis.
Ms Cucchaiara said not knowing what was wrong with her body was the hardest part of her journey.
Speaking of the long-running ordeal, Ms Cucchaiara, from Cologne, Germany, said: ‘I was anxious, concerned and scared.
‘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.
At one point in her diagnosis journey, specialists believed she may in fact be suffering with lymphoma — a deadly form of immune system cancer.
She said: ‘The oncologist was very convinced, even before she took a biopsy.
‘She had even already informed me about the chemotherapy and egg retrieval.
Ms Cucchaiara was eventually diagnosed with Still’s disease — a form of arthritis that affects 1 in 100,000 people
‘So I had already prepared myself and was very shocked that it wasn’t cancerous.’
By the beginning of 2021, the pain had become torturous, forcing her to give up work and studies.
She was referred to a rheumatologist — a specialist in musculoskeletal conditions — who eventually diagnosed Still’s disease.
‘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.’
The illness is an autoimmune condition that is only diagnosed in adults and is thought to affect just 800 people in the UK, or one in every 100,000 adults.
It happens when the immune system goes awry and generates inflammation continuously, even when there’s no infection or injury to heal.
Symptoms include sore throat, fever, jointpain and a salmon-pink rash that comes and goes quickly.
Despite taking multiple medications, Ms Cucchaiara’s pain is still severe, and she relies on a wheelchair to get around.
Symptoms of Still’s Disease can appear similar to a virus, including fever, rashes and joint pain.
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.
Ms Cucchaiara injects herself with medication everyday.
She said: ‘I’ve got used to injecting myself everyday, and I’ve come to terms with the fact that there is no cure.
‘Some days it’s really hard, for instance when I have to cancel plans or appointments, on days when the pain is extra high, or if I’m in the hospital.’
Despite the medication, she still suffers agonising pain in her joints and muscles, as well as cramps in her bladder. The agony has become so severe that she relies on a wheelchair to get around.
Ms Cucchaiara was forced to quit her nursing career due to her disability, and now wants to raise awareness for her condition.
She said: ‘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.
‘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.’
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.
‘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.’
