Imagine your skin being so inflamed it feels like you’re constantly on fire – meaning even a slight gust of wind can leave you in agony.
While this may sound like a nightmare, it’s a grim reality teenager Hannah Battersby has to endure every single day.
The 17-year-old, from Wigan, has complex regional pain syndrome sometimes known as 'suicide disease', one of the most painful conditions in the world.
The teen was first diagnosed with the incurable illness when she was just 12-years-old. A keen swimmer, the youngster first knew something was wrong when she started aching after races.
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She then began experiencing pain in her back and legs, prompting her family to take her to a GP.
Due to the condition being poorly understood, Hannah, who is currently studying at Priestly College in Warrington, was initially diagnosed with growing pains. But as the agony persisted, she went back to her doctor again.
Hannah was transferred to Alder Hey Children's Hospital where she had several tests and scans. After a year of being passed around different departments, she finally received a diagnosis of CRPS.
“When I’d finish swimming, I’d be aching around my lower back,” she told the Manchester Evening News. “I just kept getting worse and after one specific time trial I just couldn’t walk. I was in so much pain, it was like a burning sensation.
“It’s so hard to diagnose and with it being so rare, it wasn’t on the radar at the time.”
Complex regional pain syndrome, or CRPS, is a rare condition where a person experiences persistent severe and debilitating pain. Although most cases of CRPS are triggered by an injury, the resulting pain is much more severe and long-lasting than normal.
The pain usually only affects one limb but it can sometimes spread to other parts of the body. The skin of the affected body part can become so sensitive that a slight touch, bump or even a change in temperature can cause intense pain.
The condition has been nicknamed 'suicide disease' because sufferers often say they would rather die than continue to experience the intense and prolonged pain.
Following her diagnosis, Hannah was immediately started on strong painkillers and told to attend physiotherapy sessions at least once a week.
Despite the treatments, the teen still lives in intense pain – agony that can make even simple tasks such as getting changed or sitting on a chair feel like torture.
“There’s just not enough research,” she added. “[The medications] helped at the time, but mine got progressively worse.
“It was progressing at a rate that wasn’t quick enough for the treatments. Now my skin is incredibly sensitive, even if a friend was just pushing past me, I’d feel it a lot more than other people.
“My skin is burning all the time; it’s like being on fire constantly. Part of you can tolerate it but my normal is being in pain. It’s very easily aggravated.
“It affects everything now. It’s completely taken over my life in the worst way. My condition dictates how I live now. The pain can be horrendous, even being outside for 15 minutes with the wind and being active can affect it.”
Hannah now holds out hope that a pain clinic will be able to ease some of her suffering once she turns 18.
“I have to plan out my journey because if I’m walking for too long it’ll be too painful,” she added. “I have to plan my days ahead of me. I can’t do the things I want to do in my daily life.
“I’ve got an active friend group, I have to watch my friends have a life while I sit back and wait.
“When I was first diagnosed, I remember I was in a really depressed phase for a really long time. Everyone knew it, but no one knew what to do because what can you say? There’s nothing you can say to change anything or make it better.
“There’s just not a lot anyone can do. It’s got to get better with time.”
Hannah is now set to climb Mount Snowdon to raise funds for Burning Nights CRPS Support, a charity which helps CRPS sufferers live as normally as they can.
To donate, follow the link by clicking here.
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