My darling Granddaughter, Amy Pohl, is 25 years of age and a Primary School Teacher. She absolutely loves her job and is adored by her young pupils. One day in December 2017, something happened that changed her life dramatically.
She developed a bad case of croup, having difficulty in breathing and was advised by her Doctor to attend the A&E department of our local Hospital.
Due to a failed Cannula insertion, she subsequently developed CRPS, (Complex Regional Pain Syndrome),a little known incurable affliction, which causes agonising pain in the affected part of the body, in her case, her left arm. This pain is recognised to be above level 40 on the McGill pain index, more painful than Childbirth or Amputation of a digit.
This pain is with you 24/7, and no amount of drugs take the pain away, or even touch it. During the next few weeks, Amy also developed FND, (Functional neurologoical disorder) and PTSD(Post Traumatic Stress Disorder).
The key symptom of CRPS is prolonged pain, described as a ‘Burning’ pain, for which there appears to be no relief. The pain may spread to the entire arm or leg, even though the initial injury might only have involved a finger or a toe. Major studies report that 1 in 3,800 people in the UK are diagnosed with CRPS each year.
Amy has now been an in-patient in hospital since October 2018, and probably will remain there until a Specialist facility becomes available under the NHS, which could be another 1 to 2 years away. The pain is worsened if the left arm is touched, or subject to heat, cold, moisture or air current. She also has Dystonia in her hand, which causes the muscles to contract repetitively.
Due to the FND, she has lost the use of both legs, she has no feeling in them, she cannot sit up in bed, she just falls over like a baby. She also suffers from PTSD (Post Traumatic Stress Disorder) - caused by flashbacks to when she had the failed Cannula insertion. Eating has become so painful, that she has to be fed through a tube. She has been in and out of hospital since December 2017, and has not worked in the job that she loved since that time.
If you would like to see Amy the ‘warrior princess’ fighting CRPS, FND and PTSD, click on the link below.
We are heartbroken at what has happened to our granddaughter - we need to pay for her to attend STEPS Rehabilitation Centre in Sheffield, or a similar facility, for this vital treatment to get her walking again. There will be lots of further treatment involved in the future, but this is the first step on the ladder to a more normal life for her, and hopefully a return to teaching, and, finally, returning home to be back with her beloved parents, brother, and her amazing dog.
And here here is our hero visiting his lovely Amy in hospital .
Before Amy contracted CRPS, we had never heard of it, but we have now!! We have searched high and low for any potential cure, but, as the illness is little known in the medical world, there is hardly any funding for it in NHS hospitals. We will continue to spread the word about CRPS, in the hope that a cure will be found.
STEPS in Sheffield, are a specialist unit offering rehab to people such as Amy. There are other special units offering their own treatment, but all of them have huge waiting lists for NHS patients but some take on private patients. We are afraid that Amy’s condition will deteriorate the longer treatment is delayed.