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Caylee’s Story

Caylee’s Story

My story began a few months after I got married. My first symptom was the sudden onset of intense pain while I was at work one day. After a few hours, the pain subsided but I decided to make an appointment with my family doctor a few days later.

Rachel’s Story

Rachel’s Story

My doctor said I have a 72% chance of being alive in 10 years; those are great odds for a cancer patient. One of my doctors guessed that I might have had six months without treatment. I’m happy that I was a candidate for surgery and HIPEC. Without it, I’d probably be dead right now.

Starting a food diary

Starting a food diary

Many patients discover varying degrees of issues with food and drink during the weeks and months after their operation. Although appendix cancer and pseudomyxoma peritonei patients may have similar cytoreductive surgery (CRS), including the partial or total removal of...
Rare Disease Day 2015

Rare Disease Day 2015

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.

Receiving a diagnosis

Receiving a diagnosis

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.

RareConnect

RareConnect

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.

Stacey’s Story

Stacey’s Story

My name is Stacey, I’m 31 years old and a mother of five from the Gold Coast in Australia. I can literally say my baby and obstetrician saved my life! I had caesarean section on July 12th. This took 35 min and I was delivered of a beautiful, healthy, big baby...