Our Thanks, and a Request for Your Support on a Petition

My family and I cannot thank all of you enough for your overwhelming support after taking time to listen to the CBC interview. We're reeling from the huge amount of emails that have arrived in the last twenty four hours, every last one of them positive, encouraging and uplifting!

I've spent a good amount of time teary-eyed reading your generous offers to help in any way you can. Here's one way that we can all lend our support to further the awareness of issues and challenges that Canadian rare disease patients face.
The organization "Be Fair 2 Rare" was started by Simon Ibell, a man who is all too familiar with the type of battles that our family has been fighting. You'll be hearing more about this organization in future posts - but what I'd like to draw your attention to is a petition in support of a Canadian Rare Disease Plan and Orphan Drug Policy.

Please visit the website by clicking here to access the petition link on the right hand side. You'll also be able to add your support to this cause using Facebook, Twitter - or purchase a scarf to help fund this organization (the three of us will soon be wearing ours proudly!)


If you'd like to help directly fund research for Erdheim Chester Disease please visit the ECD Global Alliance website here, click on "How Can I Help?" on the left hand side to find the "Donate" link.


In the broadcast you heard Durhane Wong-Rieger eloquently explain one of the challenges that rare disease patients face when needing to visit their local emergency department when their disease places them in crisis. Doctors and nurses often have never heard of the patient's condition and in turn the patient may not get the appropriate care (I can't think of a better reason for computerized health records for Canadians!). I'd like to share one of my own experiences from this past year.


Last March, after having a rather uneventful day I hauled myself up to the family room to watch a bit of TV (I have a bit of an obsession with Coronation Street and hate to miss it!). Partway into the program I began having trouble breathing. Not like my usual breathing difficulties (one of the side effects of pericarditis), it seemed that I could take in less air with every breath until I felt like I was choking. Not being able to speak I made my way as far down the stairs as I could, and began pounding on the wood floor to catch the attention of my husband who was in the basement at the time.


He quickly realized that I was in trouble and called 911, Ambulance, fire truck and police arrived within minutes and quickly administered nitro tablets and oxygen and prepared me for the trip to the hospital. Outstanding care!


However, at the hospital it was unfortunately a different story. I was quickly taken into the cardiac room in the ER, and things started off well. My husband was trying to explain what my illness is about, and that problem quite likely was fluid accummulation in the heart or lungs (something we're constantly on watch for).


When the doctor arrived he asked my husband to leave the room, and he very abruptly turned to me (on oxygen but still somewhat struggling for air) if I had googled my symptoms and self-diagnosed myself with Erdheim Chester Disease. "See this sort of thing all the time" he says. Then he proceeded to write an order to the nurse for morphine, all the while me insisting that I didn't want narcotics - my issue was breathing difficulty that night, not pain.

I'd written about the ER trip last March on this blog, but hadn't written about what the doctor had said to me. I felt embarrassed at being labeled a hypochondriac (if you know me, you already get that I'm much quicker to downplay my pain and discomfort rather than use if for attention!)
I felt that I'd done something wrong, and it's been bothering me ever since. I should have spoken up to the doctor and stood up for myself, but when you're feeling as scared and ill as I felt that night relief is the only thing on your mind.

Things need to change. And I'm excited about the possibility that I might be able to help in some small way.