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
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.
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!
Calling all budding artists – our Christmas Card Competition 2017 is launched!
Fertility treatment, ovarian cysts, miracles, hernias and crossed fingers.
Before I was diagnosed, I experienced increased abdominal size and piercing pain which was diagnosed initially with an inflamed appendix. It took about four months and another doctor for me to get the correct diagnosis at the end of January 2014.
You may have seen posts on our Facebook page from the Yorkshire Yaks and wondered about the association with Pseudomyxoma Survivor.
Adam is quite simply one of the most amazing people we know – you might have seen his story in the newspapers or on tv recently.
I was 35 and had only just embarked on what should have been the most exciting chapter of my life so far. I was living in Australia with my girlfriend Laura, and whilst working on making the most of the hospitality and weather.
But the care-free life we were just starting to enjoy wasn’t to last, and in a devastating turn of fortunes we were faced with a choice that no one should have to consider; life or death.
Cancer52 is an alliance of 90 organisations, within the UK, working to address inequality and improve outcomes for patients with highly challenging disease, such as pseudomyxoma peritonei (PMP). 52 percent of UK cancer deaths have been determined to be from the less common cancers (although recent statistics show a likely increase to 54%).
Have we told you about Audrey the PMP Unicorn? As you know, pseudomyxoma peritonei (PMP) is a rare disease and unicorns are extremely rare. Audrey is travelling around the PMP community sharing pictures of her travels, raising awareness and some money in aid of Pseudomxyoma Survivor as she goes.