Pseudomyxoma Survivor

The support network for those affected by PMP, appendix cancer and peritoneal surface malignancies

If you’ve found Pseudomyxoma Survivor, chances are you’ve been affected in some way by pseudomyxoma peritonei (PMP). We’re here to provide emotional support and practical advice, through an online community that’s proven to make a real difference.

We’re a patient-run organisation offering advice on managing symptoms and all aspects of living with this rare disease; we advocate for patients and more. As well as all this, we’re people you can share experiences with and share the laughter and the tears.

Together we’re stronger and can face anything.

Community

Find out more about our online spaces where you can meet other people affected by pseudomyxoma peritonei, including a secret Facebook group.

More about PMP

We share information about pseudomyxoma peritonei. It isn’t like other types of cancer and it can get confusing. We can help with that.

Buddies

A one to one, personal and confidential friend to supplement the support already given by your family, friends and doctors. A Buddy offers a sympathetic ear and insight from their own experience.

About Us

We offer practical and emotional advice on managing symptoms and all aspects of living with this rare disease, advocate for patients and more.

 

Stories from across the world

 

I had cytoreduction and HIPEC and now I’ve climbed Mount Kilimanjaro!

My local hospital happens to be the centre in Israel for treating this disease and two of the surgeons working there have extensive experience in performing cytoreductive surgery and HIPEC. To those of you have undergone this procedure, I don’t need to say more. If you are still recovering or about to undergo it, I wish you excellent care, strength, patience, and a complete recovery.

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Rare Disease Day 2017, Research, Audrey Hepburn, Sean and us

Rare Disease Day is held on the last day of February every year to raise awareness of rare diseases and the theme for this year is research. Research is key as it brings hope to the millions of people living with pseudomyxoma peritonei (PMP) and other rare diseases across the world and to their families.

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I had shortness of breath and my sides ached

I was experiencing shortness of breath and my sides ached when walking around, nothing specific. I had an ultrasound which showed a large tumor which was confirmed by MRI. I had surgery at my local hospital to remove a tumor the size of a football and my diagnosis of pseudomyxoma peritonei (PMP) was confirmed.

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From patients and from caregivers

Following my diagnosis with pseudomyxoma peritonei, I couldn’t have coped without the advice, words of wisdom and support from this site and the support group. In my hours of darkness, the support group has been my shining lights leading me forward. Meeting people at our get-togethers and hospital visits and the sharing of others’ visits give a real sense of finding a new family.

Emily

PMP patient

Being relatively new to the group, I just wanted to say how cool I think it is that we are from all over the world and yet we share and are brought together by something so life changing. It is something that bonds us together in a way that shared nationality or age or gender alone never could. I just wanted to let all of you know how much I value knowing you are out there and supporting each other.

Linda

PMP patient

When I was first diagnosed with an appendiceal tumour, I was terrified. All the information I found initially on the Internet talked about awful outcomes, local doctors knew less than I did, and suddenly I was being treated miles from home. I was very pessimistic about the future. When I found this website, suddenly things started looking more hopeful.

Sarah

Appendix cancer patient

I found this website extremely useful with answering questions when I was first diagnosed with pseudomyxoma peritonei. I am almost a year post diagnosis and I could not of managed without the support, the answers, the love and hugs sent when you’re down. It’s an amazing site and the support group is full of lovely people.

Pauline

PMP patient

Shop with us

Have a look at our t-shirts, technical shirts and more in our shop. What will you buy?

 

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We need your support

Pseudomyxoma Survivor relies solely on donations to carry out the work that we do.

 

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Specialists and surgeons

Our directory is updated with information provided by the specialists themselves and is constantly reviewed.

 

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Sign up for our newsletter

We publish our newsletter about every 2 to 3 months.

We only share when we have something worth talking about.

 

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Get in touch

 

Whether you are a patient or a caregiver, a medical professional, a fundraiser or a donor, we would love to hear from you.
You can also follow us on Facebook, Twitter, Google+ and YouTube.

 

Contact

Due to availability, it may take us longer to get back to you than we would like. Please be patient with us. Thank you!