Helping those suffering with CRPS

My name is Hannah Battersby, I am 17 years old and living in Greater Manchester, and I have a condition known as Complex regional pain syndrome (CRPS). CRPS is regarded as the world's most painful incurable condition and my goal this year is to climb Mount Snowdon to raise money for a charity helping those living with this condition every day. Alongside CRPS, I also suffer from spina bifida and postural hypertension.

I was diagnosed with CRPS when I turned 12 and from that day, my entire life was flipped on its head. I was swimming from an early age (3/4) and began joining clubs and swimming competitively around 9. It was my entire life and everything I did revolved around the pool. However, when I turned 11 years of age, I started experiencing severe pain in my lower back it felt like I was on fire, and this gradually got worse. After around 6 months of pushing through the pain and trying to continue, I eventually got to the point where I had to stop swimming. My dreams of becoming an Olympic swimmer and making a career out of it were crushed and I declined mentally for a long time as I watched my friends go on with their lives. Meanwhile, I was held back due to not being able to keep up with my peers which is something I suffered greatly because of.

It was only then at the age of 12 that I was diagnosed with CRPS. Complex Regional Pain Syndrome, the pain levels are above childbirth and is the most painful chronic condition commonly nicknamed the suicide disease due to the unfortunate high suicide rates due to the constant pain experienced by those with the condition. It has no cure and is unpredictable, and only affects around 16,000 out of the 64.33 million living in the UK currently. It is poorly understood, and I am yet to come across somebody who understands what the condition is without me having to explain it. No matter how much I raise, my aim is to change how many people actually understand CRPS and raise awareness of the condition.

CRPS commonly affects only one limb, however, in my case it has spread to other parts of my body. My skin is one part that is affected, and it can be sensitive and any touch, change in temperature or bump can cause it to flare up with pain. The pain is a burning sensation as if your skin or affected parts are on fire constantly. Imagine living your life on fire, people are unaware of the number of things that touch you during the day, think even the act of putting clothes on or taking them off, sitting against a chair, laying down, blankets, showers, everything can be incredibly painful for sufferers. While some cases do improve, others like mine persist for years. There is no cure currently, only management of pain.

I joined the Army Cadets shortly after getting back on my feet mentally, which was a huge turning point in my life. They gave me back the freedom to do things I enjoyed but helped me limit it to what I would be comfortable with, through this I have met some amazing friends who have been there for years and encourage me every day. The ACF (Army Cadet Force) has helped me through every part of this condition both the mental and physical challenges and ensured that I had every opportunity that anyone else had, which was something that few people with my condition will get to experience. That is why I am choosing to complete this walk with the people from the ACF who have seen me at my highs and lows and been there to support me through it all.

I want to walk up Mount Snowdon as it is something I have been wanting to do for years, however, this seemed just a little out of my reach. With the support of my friends, college, ACF and family I want to give it my best shot and believe I can do this. In the meantime, I will be fundraising and trying to raise as much money as I can for the Burning Nights charity. This charity helps those who suffer from CRPS try to live a life as normally as they can, they offer support for those who have been affected by CRPS and those surrounding them, they offer counselling services and a shoulder to cry on when it’s needed and finally, they also help support clinical trials in hopes that maybe one day, there will be a cure.

Thank you for reading my story, and I hope that somewhere it’s taught someone something.

Hannah.