Appendix Cancer and PMP Patient Organization Statement
The Rare Disease Day 2015 theme is: Living with a Rare Disease – Day-by-Day, Hand-in-Hand.
As patients and caregivers who have been impacted by peritoneal cancers (Appendix Cancer, Pseudomyxoma Peritonei, and other Peritoneal Metastases) our organizations have chosen to join together to share a simple message about these diseases.
My original symptom was an ‘irritated‘ bladder — it is difficult to describe but the closest I can come up with it that it felt like it was vibrating all the time. In March 2010, after several months of bladder discomfort and many trips to my GP, I was referred to the gynae-urinary clinic at my local University hospital with suspected bladder prolapse.
Pseudomyxoma Survivor is proud to introduce a new online community to our members and friends. In partnership with EURORDIS and NORD, two of the world’s most established rare disease patient organisations, we’ve created a place where you can connect with others from around the world who know what you’re going through.
Fay had her operation at the Christie Hospital in Manchester when she was just 28. She has been diagnosed with PMP. She shares her story.
I don’t know what has come over me recently but I am just starting to raise my head above the parapet. Which, considering I was first diagnosed in 2003, does make you wonder what I’ve been doing in between my 6 operations (MOAS in 2009), 3 rounds of chemo, radiotherapy, rounds of IVF and — oh, yes — that ‘miracle baby’ who is now 6 years old and in full teenage strop mode.
Did you know that the percentage of patients diagnosed with a rarer or less common cancer in the UK is now 53%? No, I didn’t either until I went to the latest Cancer 52 meeting at the House of Lords.
I feel great. I was worried about catching colds and things without my spleen but I’m as healthy as I was before. My son and husband have caught colds but I have not which is normal for us. I have caught a sickness bug from my son since surgery but I recovered quickly with no problems and again compared to what I’ve been through, it felt like nothing.