As you probably know, February 28th was Rare Disease Day (think we mentioned it enough times?). Today’s guest blogger, Mel, had the brilliant idea of using Rare Disease Day as an opportunity to raise some awareness of pseudomxyoma peritonei in her workplace.
I decided to use Rare Disease Day as a way of raising awareness of pseudomyxoma peritonei (PMP) and raising funds for Pseudomyxoma Survivor at the same time. I ordered some leaflets and a poster from the web site and used them to create a display in our staff canteen area.
I created my own poster and “came out” to my fellow work colleagues about having PMP and how rare it is. The reaction I received from them was overwhelming (which even resulted in me giving them a small talk about it in their lunch breaks!). Of course, no one had heard of it (apart from one of my colleagues who has a cousin that had his MOAS¹ in October, such a small world!!) and they were surprised that only two hospitals in the UK specialise in treatment.
I had a lot of sympathetic “We didn’t know you were ill” comments to which I gave them my normal reply of “Well, I’m not”. I left them some leaflets to take away and I hope that by bringing it to their attention that they will spread the word and get people the early diagnosis they need. Oh and one other thing… I had over £90 of donations for raising awareness that day which brings my JustGiving page total to over £500 in just two weeks!!
We would like to say a huge “Thank You” to Mel and she has certainly given us some ideas about what we could do for the next Rare Disease Day! You can support Mel by visiting her JustGiving page.
¹MOAS – ‘Mother of all Surgeries’.
This is a nickname for the big cytoreductive surgery – full peritonectomy and HIPEC. It was thought up by the wife of an appendix cancer patient some years ago via her blog.