Please note this blog contains graphic images. 

This blog also contains references to Anita’s experience with medication. Anita’s treatment was prescribed as part of her personal care plan. If you are struggling with Pyoderma Gangrenosum, please contact your GP and/ or dermatologist as each person needs to be assessed on an individual basis.

Being diagnosed with Pyoderma Gangrenosum

In 2012 after a biopsy, I was diagnosed with the autoimmune skin disease Pyoderma Gangrenosum. 

Although at the time statistics said that it only happens to 1 in 100,000 people, I now believe after my experience with the disease, research I've done, and getting to know others with the disease the statistics are wrong as many patients have been misdiagnosed or cases have gone unreported.

PG causes chronic open wound like, deep ulcers on the body, mainly on the legs, but in some cases elsewhere on the body too. It is also, in some cases like mine, life-threatening and people have sadly lost their lives to this horrific complex disease.

PG can happen on its own but does often coincide with other autoimmune conditions such as Lupus, Crohns, Ulcerative Colitis and other bowel diseases. In my case, I have Osteo and Rheumatoid Arthritis.

My wound was on the inside of my right ankle. It started off as a blister and just got bigger and deeper over a short period of time. I had my wound for 7-8 years and it was trial and error with treatments and drugs. Some medical professionals at the time had not even heard of it. It's very complex to treat as it is often combined with other conditions and no two patients are the same.

      

Unlike ulcers caused by diabetes or pressure sores where the nerve endings have died, PG is EXTREMELY painful, as the nerve endings are very much alive. So much so that the pain from PG wounds has been compared to the pain of childbirth! 

I had weekly visits to a tissue viability team of nurses who dressed my wound and used pressure bandaging to try and heal my wound. My wound eventually got so deep that on 3 separate occasions my femoral artery burst, and I nearly bled to death, resulting in countless emergency hospital admissions over the years. 

The road to recovery

Luckily for me, my local NHS Trust Hospital Dermatology Department in Stockport eventually merged with Salford Royal Hospitals Dermatology Department in Greater Manchester/ Lancashire, and I was diagnosed properly by my new consultant who was incredibly knowledgeable about the disease. 

After trial and error with countless drugs that didn't work for me, my consultant wrote to NHS England and asked for funding for me to be referred for biologics (a type of biological chemotherapy and immunosuppressive drug). After 11 infusions of Infliximab over 15 months and continued treatment by my tissue viability nursing team my wound eventually healed! 

I am so grateful for the NHS and although my treatment was not always straight forward, the hard work and dedication of my medical team allowed me to win in the end.

Moving forward 

In 2017 I was awarded a Regional and National UK Sports Inspiration award for using gym rehabilitation to work my way out of a potential full time wheelchair. I used the platform the award gave me to spread awareness of PG.

In 2018, I decided after all I'd been through to launch a government petition for funding into research into Pyoderma Gangrenosum. Although it has been researched under the umbrella of inflammatory diseases and, once individually at Leeds University, either funding has run out or there hasn't been enough specific research into the disease itself.

I am pleased to say that because of the awareness that has been created through my petition and awards, one of my tissue viability nurses and my dermatology consultant have said that patients are being diagnosed with PG far more quickly.

Although my journey has been hard and pretty traumatic, I have never given up the will to fight and survive this chronic disease. I have lost a few friends to PG and I don't want anyone to have to go through what I, and many other people, go through. Awareness of PG is on the rise and I hope that by continuing to tell my story and ask for signatures on my petition, we can work together to make life better for PG sufferers.

I need at least 5,000 signatures for a response from the Government and at least 100,000 signatures for the funding into PG to be heard and discussed in Parliament.

I would be so grateful for more signatures and for my petition to be shared as much as possible amongst your friends, colleagues and family.

Anita Graham-Nickson

Sign Anita's petition here

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