Jill’s Book Review

I have had ME/chronic fatigue and Fibromyalgia for about 12-13 years. I was diagnosed with low-grade PMP (pseudomyxoma peritonei) in February 2016 which I had probably for 10 years. I had my cytoreductive surgery and HIPEC in May 2016 and was in the North Hampshire...

Why you should see a PMP specialist

I can’t say it enough… are you dealing with a PMP specialist? If not, I would say you must.

They are the ones that have seen this stuff and the weird things it does. They can give better ideas as to what to do.
In my case, waiting seemed the best option at the time but with the specialist’s input, I chose to go ahead and now, even with the debt, the new body norms and everything, I am sooooo glad I followed his advice! He would have told me to watch and wait if in his experience there was a low risk. And I would have done it.

MP backs group work on cancer

Susan met with Ilkley MP, John Grogan, to discuss the work of Pseudomyxoma Survivor and Cancer52. Based on current data, 46 percent of cancers diagnosed are rare and less common, yet they account for 54 percent of cancer deaths.

Where did we come from?

Launched by Dawn Green in 2011, Pseudomyxoma Survivor works to improve the lives of the living with PMP, as a patient or as a caregiver. Struggling to find support herself, Dawn was keenly aware that there was a lack of emotional support for anyone with the disease. She dedicated the website to the memory of a fellow PMP patient, Julie Stanton.

You have to do research to find the right medical team that is experienced in treating PMP

I didn’t have any related symptoms before my diagnosis. I went to the urologist for some UTI treatment. The doctor (my hero) ordered a CT scan. That was the beginning of my journey. PMP is so rare and the right treatment is so important. You have to do research just to find the right medical team that is experienced in treating PMP. My wife and family, of course, were there for me.

Golden Wedding Celebrations

When Floss and Alan were celebrating their Golden Wedding Anniversary recently, they want to give something back for the support their daughter has received from the charity. Instead of gifts, they asked their friends and family to make a donation and have raised over £500 in aid of Pseudomyxoma Survivor!

Thank you, Floss and Alan and congratulations! The cake looks amazing xxx

The Newcastle Rare Disease Showcase

Most of the talks were interesting and, despite being very specific to particular diseases, there were positive messages that could be applied across the board of rare diseases. What draws us together is the human aspect; the isolation, the struggle for recognition (especially with invisible diseases), the importance of support from loved ones and the belief that we can still be the best we can be despite a disease.

Findacure Rare Disease Showcase, Cambridge

The charity Findacure recently organised a Rare Disease Showcase in Cambridge, and I attended as a representative of Pseudomyxoma Survivor.  My only slight problem was that my badge simply said ‘Pseudomyxoma Survivor’ so I had to keep explaining that I actually represented an organisation and wasn’t there as a lone survivor of a rare disease!