Sean Hepburn Ferrer, the patron of Pseudomyxoma Survivor, tells us about his mother and how pseudomyxoma peritonei (PMP) affected her and the family.
Pseudomyxoma peritonei (PMP) is a condition thought to affect around three people per million each year. In most cases, it starts in the appendix; more rarely, it can start in other parts of the body such as the bowel, an ovary or the bladder.
PMP develops from a small growth on the inner lining of an organ. At this early stage, the tumour is rarely discovered as it doesn’t cause any symptoms. Left untreated, the tumour grows and eventually bursts through the wall of the organ into the abdominal cavity where more tumours then develop.
These tumours then secrete a jelly-like substance called mucin which accumulates in the abdominal cavity. It is this build-up of mucin that causes symptoms, the abdomen swells leading to the characteristic ‘jelly belly’ and vital organs are compressed.
There is no known underlying cause of PMP.
PMP symptoms usually take a while to appear; some patients don’t show any symptoms for several years. Symptoms of PMP vary widely between patients so it’s hard to say what to look for. As the disease progresses, many patients report:
• Abdominal swelling or an increase in abdominal girth
• Changes in bowel habit
• Loss of appetite
• Pelvic or abdominal pain
• General fatigue
• Bowel irritation
These symptoms can be caused by lots of medical conditions other than PMP. However, due to the nature of this cancer, it’s vital to rule out PMP as a cause.
As patients wouldn’t usually have any symptoms until the tumour has broken through the wall of the appendix and released mucinous cells into the abdominal cavity, having your appendix out at that stage wouldn’t remove those cells and tumours would continue to develop, mucin would continue to be produced and PMP would develop.
You can find out more from Pseudomyxoma Survivor, a charity established primarily to provide emotional and practical support to those affected by the disease but also to raise awareness and to raise funding to support research.
Pseudomyxoma Survivor is completely dependent on voluntary donations. It is too small to have offices or staff; the charity is run entirely by volunteers.
With thanks to Jenny Ramage for her help in producing this video and to Sean Hepburn Ferrer for taking part.
To show your support for Pseudomyxoma Survivor, text 'PMPSONLINE' to 70450 to donate £10, if you are in the UK. Texts cost £10 plus one standard rate message and you'll be opting in to hear more about our work and fundraising via telephone and SMS. If you'd like to give £10 but do not wish to receive marketing communications, text PMPSONLINENOINFO to 70450. Alternative, go to www.pseudomyxomasurvivor.org/d... for other ways to make a donation.
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