When Jessica Hodge tells people she has Complex Regional Pain Syndrome, the first question is usually: “What’s that?”
Few people have heard of the condition which has left 19-year-old Jessica in a wheelchair and unable to sleep because of the constant pain.
It was a month before her 11th birthday that she developed a rash on her right leg, the same leg which she had an operation on at the age of six to correct a club foot.
Jessica, of Asquith Street, Gainsborough, said: “It looked a bit like eczema and the doctor gave me some cream but it just made it worse, it would go bright red and become very painful.”
It took six months before she was diagnosed with CRPS.
“I had never heard of it so my mum went on the internet to find out more and we couldn’t believe how many of the symptoms I had.”
“It could have been caused by the leg brace I had to wear after my foot operation but we don’t know why it happened five years later.”
Her symptoms include a burning sensation like scalding water on the skin, hyper sensitivity, with even the slightest touch causing intense pain, swelling and a change in skin colour.
Jessica’s mum Yvonne, 46, said: “Most people have never heard of it and so they don’t understand what it’s like.”
Yvonne works fulltime at a doctor’s surgery and goes home every lunchtime to help Jessica make something to eat.
They have a stair lift so Jessica can get upstairs, and grab rails in the bathroom.
Yvonne said: “She fainted once in the bath because of the pain so we have to be careful and be around for her, but let her have her privacy.”
Jessica had to give up a childcare course at Lincoln College because of her condition and has now set up a CRPS Twitter account to raise awareness.
It has more than 1,400 followers and she has gained the support of celebrities including JLS, Peter Andre, and Paralympian Ade Adepitan.
“It’s good because I can talk to other sufferers, it helps to know you’re not alone with it and there are other people out there going through the same thing and I’ve made friends through it.”
Jessica hopes to organise some awareness events if she can get her pain under control.
She is due to have a spinal cord stimulation operation at Sheffield’s Hallamshire Hospital in May or June this year.
“They will put an implant into my spine which will be controlled by me with a remote control and could take 50 per cent of the pain away if it works.”
“I am on some medication at the moment but it doesn’t control the main pain. I only get an hour’s sleep at night and have to put pillows round me to keep the duvet off me otherwise it hurts.”
Jessica has an older brother Daniel, 22, who lives in Sheffield, and who takes her out. She also goes out to see her best friend Emma who she has known since they were three and who also uses a wheelchair.
She said: “It hasn’t been easy growing up with this disease and I couldn’t have got through it without the support of my family and friends, they have been incredible.”
*Jessica’s Twitter account is @crpsawareness.