After discovering that this illness might be the answer to all my health problems I went on a search to see if I could get help if the condition got the best of me. To my amazement this condition just like many others are still not a recognised disability. 

Let's change this!! 

Polycythaemia vera is a rare incurable condition that in the last few years was recognised as a slow growing chronic  cancer. 

This does not come under any special rules with PIP as it is not classed as a aggressive terminal illness but the symptoms are life changing and can be fatal in the short term as well as the long term and sufferers do not know how it will affect them from one day to the next. 

However the DWP does not recognise this condition as a disability despite its profound effects and many sufferers are refused claims to much needed benefits that can help them when they become too ill to work. 

To name a few symptoms... 

• Chronic Fatigue
• Bone pain and gouty arthritis
• Headaches and vision problems
• stomach ulcers
• insomnia
• depression
• sweating
• violent itching
• poor concentration aka brain fog
• bleeding problems
• high blood pressure
• Breathing issues and chest pain 
• Painful Bruising

As well as being at greater risk of heart attacks, strokes, blood clots and thrombotic events are just some of the things people with PV face and that’s before any side effects from treatment received to manage this condition such as bone marrow biopsies and regular phlebotomies. 

The text books will tell you that sufferers “can” lead a relatively normal lifespan, those same text books point to the fact that most sufferers get it in later life so yes the normal lifespan applies (hopefully) but the younger generations struck down by this probably won’t make it to the new national retirement age. 

There is a risk of our bone marrow burning out or this turning into a more aggressive form of blood cancer and when the doctors tell us the chance of this is quite small in comparison...they forget their statistics tell us that there is a 1 in 100,000 chance of us being in that chair receiving that diagnosis in the first place.

Please help me to rectify this. Thank you