Rare Disease Day: Me and PTLD

Happy Leap Day! And Rare Disease Day!

There are many rare cancers in existence. And I'm lucky enough that post-transplant lymphoproliferative disorder, my cancer, is considered to be one of them. (A refresher on PTLD). It occurs in 3-10% of people who get a transplant (depending on the organ transplanted) and seeing as according to the Government of Canada, only roughly 2000 people get a transplant every year (data from 2006-2012), that puts me in a pretty small percentage. Add to that my cystic fibrosis and the percentage gets even smaller.

Which is why my doctor's looked like they were having a heart attack when I was diagnosed. And why, like Alicia, when I go to the emergency department, I have to explain everything to the doctor on call who looks panicked and gives me the blank stare. No one knows what to do with me until I tell them which is terrifying.

I thought it was bad enough to be hospitalized while having cystic fibrosis as the nurses on the general floor were always a bit panicked that they're going to break me. Add on transplant and a rare cancer and some of them treat me like a zoo exhibit. "We've never had one of you before." Fantastic.

It's not so bad in Halifax once I get through the emergency department and to the hematology floor. Once I'm on the floor the nurses have either a) seen me before or b) just focus on the cancer part. However, getting through emergency is such a headache. Every nurse and doctor want to hear about my story which is long enough as it is and even longer when I have a temperature of 39 degrees, been up since 4am, and feel like I might throw up.

For having a rare disease, I am lucky. My medication is covered by the NS health care system and I know that I'm getting the best medical care available. The doctors in Halifax are consulting with the ones in Toronto who have seen more cases which is comforting. The amount of research and information about the cancer overall, however, is still quite low. There are no good statistics about the outcomes of someone with PTLD as everyone with every organ transplanted gets lumped under the same statistics. Someone with PTLD who had a liver transplant is very different than my lung transplant. There simply needs to be more research and once again, there is always a lack of money around rare disorders/diseases.

Having a rare disorder sucks. The lack of research, community, and medical knowledge is frustrating. It does seem to be improving as communities find each other on the Internet and research is shared more easily between hospitals and countries. However, it's getting pretty old when I'm told for the thousandth time that I'm a "1 in 15 year case!" I know, please just read my chart in silence.

For more information about this entire day and organizations that help people find their communities:

Rare Disease Day 

Canadian Organization for Rare Disorders  

Rare Disease Foundation

Rare Disease Awareness: More about the Canadian Action Plan