Why you should see a PMP specialist

I can’t say it enough… are you dealing with a PMP specialist? If not, I would say you must.

They are the ones that have seen this stuff and the weird things it does. They can give better ideas as to what to do.
In my case, waiting seemed the best option at the time but with the specialist’s input, I chose to go ahead and now, even with the debt, the new body norms and everything, I am sooooo glad I followed his advice! He would have told me to watch and wait if in his experience there was a low risk. And I would have done it.

You have to do research to find the right medical team that is experienced in treating PMP

I didn’t have any related symptoms before my diagnosis. I went to the urologist for some UTI treatment. The doctor (my hero) ordered a CT scan. That was the beginning of my journey. PMP is so rare and the right treatment is so important. You have to do research just to find the right medical team that is experienced in treating PMP. My wife and family, of course, were there for me.

The Newcastle Rare Disease Showcase

Most of the talks were interesting and, despite being very specific to particular diseases, there were positive messages that could be applied across the board of rare diseases. What draws us together is the human aspect; the isolation, the struggle for recognition (especially with invisible diseases), the importance of support from loved ones and the belief that we can still be the best we can be despite a disease.

Findacure Rare Disease Showcase, Cambridge

The charity Findacure recently organised a Rare Disease Showcase in Cambridge, and I attended as a representative of Pseudomyxoma Survivor.  My only slight problem was that my badge simply said ‘Pseudomyxoma Survivor’ so I had to keep explaining that I actually represented an organisation and wasn’t there as a lone survivor of a rare disease!