Paige Rodbard-Brown suffers from Complex Regional Pain Syndrome (CRPS).
Paige Rodbard-Brown suffers from Complex Regional Pain Syndrome (CRPS).

Islander Karley Mowbray has been living with pain for eight years. She rarely talks about her little-known condition, but she is now speaking out in a bid to raise awareness.

Karley is also hoping to raise money to buy a wheelchair for 11-year-old Paige Rodbard-Brown from Windsor, Berkshire. Both Karley and Paige suffer from Complex Regional Pain Syndrome (CRPS). Only one in 4000 people experience it. CRPS CRPS is described by the NHS as:

A poorly understood condition in which a person develops a persistent (chronic) burning pain in one of their limbs. If left untreated the pain can spread to other parts of the body too.

Karley developed CRPS after a workplace accident in which her right wrist was broken. Karley says:

They put me in a cast. It’s the first thing I’d broken, so I didn’t know what to expect. I thought the pain was normal. I had to go back for physiotherapy because the limb wasn’t the right colour and it wasn’t moving like it should have been and I was in a lot of pain. It was them that referred me back to hospital. It progressively got worse. I wasn’t diagnosed for quite a long time. It took nearly two years to diagnose me. It’s mainly burning and pain. I also get swelling a hell of a lot. And stiffness in the limbs. I can’t weight bear. I can’t carry things. I lose grip. CRPS is actually the highest rated condition on [the McGill Pain Scale]. It’s rated above amputation without anaesthetic and above childbirth without any pain relief.

Minor injury

The NHS explains:

The pain usually develops after an injury – which in most cases is a minor injury – but the pain experienced is out of all proportion to what you would normally expect. For example, a person with CRPS may only strain their ankle but it can feel like a serious burn. The skin of the affected body part can become very sensitive, and even the slightest touch, bump, or change in temperature can provoke a feeling of intense pain.

Poorly Understood

Karley spotted Paige Rodbard-Brown on a national TV news programme in January and she’s now hoping to raise £17,500 to buy Paige a wheelchair. In January 2013, a schoolmate accidentally stepped on Paige’s hand during a game of football. Her bruising did not heal as it should and Paige developed CRPS. Karley says:

She can’t walk. And she walks round on her knees till they’re red raw. She’s not getting the healthcare she needs and all she wants to do is raise awareness. It is so poorly understood. You see healthcare professionals that have never heard of it. You see consultants that don’t know what’s wrong with you, so then they don’t know how to treat you. It’s paramount you have physiotherapy to keep the limbs moving. It does affect your muscles and the blood supply and the minerals to your bones.

Karley is working with friend Kathy Godolphin who says she felt compelled to help:

I’ve watched what Karley’s gone through for the past eight years and I’ve also got a daughter of ten. So knowing that this little girl is 11, same age as my daughter, going through what’s Karley’s going through – I just can’t imagine how awful that must be. It’s bad enough going through it as an adult. It’s a massive thing trying to raise that much money, so we’re going to do what we can. This chair is £17,500. It’s all signing all dancing. It’ll grow with her as she bigger. It’s something that will give her a lot more independence.

Karley and Kathy are organising a fundraising raffle and are keen to hear from anyone able to donate prizes. Contact Karley via Facebook and read more about Paige here. Find out more about CRPS here and here. lucymorgan