Living with CRPS

Complex Regional Pain Syndrome (CRPS) is so severe that one US doctor said, ”If there was a medical condition that could be described as hell, it would be CRPS.”

On the McGill Scale of pain (0-50) CRPS rates at 46.5. The equivalent of having an amputation without anaesthetic! Paige experiences this on a daily basis. It is thought that 80% of GP’s are unaware of this condition. There is no cure and little consensus on the best treatment.

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About Paige

On January 15th 2013, Paige Robard-Brown, then just ten years old, was involved in an innocent playground accident when a schoolmate stepped on her right hand during a game of football.

A trip to hospital lead to a diagnosis of simple bruising that would heal in a matter of days.

No one believed Paige when she said she was in excruciating pain – a pain that continued unabated over the next four months. Frequent trips to doctors made no difference. Imagine that you are experiencing severe and chronic pain but being told it is psychosomatic. In effect, that you are making it up! It was March before her condition was diagnosed as Complex Regional Pain Syndrome. Read “Paige’s Journal” to hear her story in her own words.

Then in May, Paige suddenly collapsed as the pain she had been suffering in her left arm appeared in both her legs. Her mother, Nicola, was distraught. CRPS had spread and Paige was essentially crippled.

At eleven years of age, Paige’s life is now proscribed by her ability to live with this debilitating affliction. It denies her all of the things a young active person enjoys. It significantly disrupts her education and, as a consequence, future prospects.

Yet Paige displays no self-pity. In fact, the opposite is true. She wants to become the face and the voice of CRPS sufferers everywhere. She wants to raise awareness of this terrible condition. And she wants to raise money to fund research into the nature of the condition, the best treatments to alleviate the constant pain and a possible cure.

To support her in this, a group of friends have created the “For Paige Trust” to help both with her needs and to raise awareness of CRPS and research into this dreadful condition.

To do this we need your help. Please, spread the message, make a contribution to our trust fund, and invite others to contribute to Paige’s mission.

Please listen to Paige’s own words and contribute if you can. Make a donation, share this site, and join Paige on Facebook and Twitter. Make a difference.

Paige is a little star

An old story: “I was walking down the beach after a bad storm and all sorts of stuff had been blown onto the shore. Up ahead I saw someone who appeared to be dancing, but as I got closer I realised she was picking up stranded starfish and throwing them back into the sea. There were thousands of starfish on the beach. ‘What are you doing?” I asked. ‘What difference can you make when there are thousands of stranded starfish?” “Well,” she said, as she flung another back into the ocean, “It makes a difference to this one.”

Give her a hand and join our community and help her make a difference.

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Living within my flames

I was born a “normal” child born late afternoon on the 17th May 2002. I lived a “normal” life for 10 years, I say normal but what is normal these days? I did and loved all the things that children do. I loved to dance around our kitchen and around the house, I loved to help mummy and daddy make fresh cakes and bread. I loved to run and play but most of all I loved to play football with my friends.