You’ve liked our Facebook page, followed us on Twitter, added us to your circles on Google+, subscribed to the blog and read the website (you haven’t? … well, that’s ok [sort of] — but hey, now is a good time to do so, right?).
But just what is Pseudomyxoma Survivor and who are the faces behind the name?
Pseudomyxoma Survivor is a non-profit organization, run by patients and caregivers. We have volunteers all over the world who help with our support group, our buddy scheme, with raising awareness and, increasingly, with running the organisation – mailing out t-shirts and leaflets, supporting our fundraisers, representing the patient voice at conferences and more.
We have a thriving support community providing emotional support to anyone whose life has been touched by pseudomyxoma peritonei(PMP). As PMP is so rare, having a group with members all around the world gives the community a scale where it is able to offer genuine support and advice around the clock – both emotional and practical. We like to call it our ‘PMP family‘.
We have a board of trustees and an advisory board. The trustees ensure that the organisation is run within a legal framework and meets all the relevant taxation and accounting regulations. The advisory board reviews the information we share on our website to make sure that it is correct.
Our aims are to provide support to patients and caregivers, to raise awareness and to support research. Support to those affected by PMP comes in a number of ways. The biggest way is through our support group, by answering your emails and through the buddy system for those times when a little extra help is needed. Raising awareness isn’t really about making sure the general public know about PMP, although that’s good too; it’s about making sure that the specialists involved in our care know of the issues faced daily by us as patients and also about making sure there is awareness in the wider medical community so that patients get access to the right treatment sooner.
Our patron has a huge interest in rare diseases – he’s this year’s rare Disease Day Ambassador for Eurordis and NORD.
So you see, we do quite a lot of things, really. It’s all done through the support of our donors – through monetary donations and through discounts and donations from vendors. We don’t get any governmental funding nor grants to keep us going so a big thank you to all of you that have donated xxx
I am a survivor of PMP. CRS and HIPEC with Dr. Martin Goodman at Tufts in July 2008
I survived surgery for Appendiceal Cancer with PMP, CRS and HIPEC at Peter Mac in Melbourne November 2013.
It’s so awesome seeing others doing well despite PMP. Just keep going! I have had PMP, i.e. mucinous appendiceal adenocarcinoma with carcinomatosis, since 2002. Like many others, I have had multiple surgeries and everything that could be spared take out ( and some things I really wish I still had- oh well, what can you do). Over my long course of this disease and treatment I have seen many things change with cancer treatment. Both with PMP and with other cancers as well. I believe if we live long enough we will eventually get to the point that we can utilize drugs to prevent the growth of PMP and in doing this make this more of a chronic manageable disease rather than a fatal one.
For me, the fight has been worth it. When I started out I was 33 years old with 2 kids ( 2 and 6 at the time) and a wonderful husband. Now my kids are 21 and 17 yo and I still have my wonderful husband. If I had died of this disease at the time. My youngest would not have even remembered me. There are years of happy memories that can never be taken away from me. So to my fellow survivors again; Just keep going. Fight your battles as they come. You can do it!