Rare diseases

I am happy to say that my story was shared on the Rare Diseases website and that Radiation Induced Lumbar Plexopathy is now listed amongst their rare diseases. This is a step in the right direction to have acknowlegment and understanding of RILP .. we need to understand the symptoms so that diagnosis cam be made earlier.

https://www.rarediseaseday.org/stories/6252

I hope that one day when you read about Pelvic Radiation Diseases that the neurological damage caused by radiation will be included, but at this stage all sites contacted refuse to add it … they say it is to rare!!!!  However as survival rates for cancer improve  I am sure we will see more people with the late stage side effect of RILP … if ever you have the chance to share your story please spread the word. It is the only way we will gain recognition. You too can add your story to the Rare Diseases web site …

 

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