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.

Receiving a diagnosis

My original symptom was an ‘irritated‘ bladder — it is difficult to describe but the closest I can come up with it that it felt like it was vibrating all the time. In March 2010, after several months of bladder discomfort and many trips to my GP, I was referred to the gynae-urinary clinic at my local University hospital with suspected bladder prolapse.

Megan’s Story

On November 30, 2009 Megan went to Northside Hospital, Cherokee, with severe abdominal pain. After hours of testing and exams, she was admitted to do further testing. Megan’s abdomen was swollen to the point that the doctors, had they already not tested for pregnancy, said that she looked to be about five to six months pregnant.Megan was diagnosed as having Stage 3c Ovarian Cancer. The tumors were large mucinous tumors. Megan was referred to Dr. Joseph Boveri, a gynaecological oncologist in Atlanta, to follow-up and to get this tumor removed.

My stomach looked really distended

When we got home from a family holiday and I looked at the photos, my stomach looked really distended. After noticing this, it just seemed to get worse and felt quite hard. I went to see the Doctor and he said I probably had wind or had just put on weight.

The Waiting is Almost Over!

It’s just two days until my operation but how did I get to this point?

The call came out of the blue. When my gynae consultant’s secretary called, I thought she wanted to say the appointment I had changed was inconvenient. But no, she wanted to ask me to come back in! Even then I wasn’t particularly worried, didn’t really have a clue why…