I am hoping that I could ask for a huge favour of friends & family.
I normally try not to disclose too much of the nitty-gritty details of all of my combined conditions but in this case perhaps I should.
For those of you who are not familiar with my conditions, I have a Scleroderma-Lupus overlap that has caused immense amounts of damage to various systems and organs in my body. One of the bigger accompanying conditions caused by the Scleroderma is interstitial lung disease, which was followed by a discovery of pulmonary arterial hypertension (PAH/PH).
A little bit of background information for you: Pulmonary hypertension is a life-threatening and rare disease affecting the arteries of the lungs. People affected with PH suffer from continuous high blood pressure in the lungs, which results in an enlargement of the heart. This can lead to heart failure. According to PHA Canada, PH is difficult to diagnose because it shares many of its symptoms with other conditions. Without treatment, the average life expectancy of a PH patient is less than three years. PH is often an invisible health problem: people who have it may not look sick. Currently, no cure exists for this disease.
Lucky for me (and completely by accident) we discovered the PH in my lungs before it even began showing signs or symptoms because I was taking part in a Scleroderma research study in December of 2009. The purpose of the study was to determine early detection in Scleroderma patients using all of the current methods of testing, especially the gold standard confirmation: Right Heart Catheterization. Lemme tell you, it’s a bearable test to have done, but having a tube threaded down to your heart is certainly not something most people want to be doing for fun ^_^; (But go figure, ~I~ did it for fun… sort of)
Six years ago, PHA Canada started a movement towards rare disease legislation. We’re hoping the Canadian Government will promote responsible and sustainable access to orphan and targeted therapies. The Pulmonary Hypertension Association of Canada and the Canadian Organization for Rare Disorders (CORD) are also very committed to assuring the collaboration of patients and patient groups on the successful design and implementation of a programme.
That’s a good thing, considering that Scleroderma is also a rare disease. So what’s happening with me? Well, for now, I’m stable. My current method of treatment for PH involves “the little blue pills”, supplemental oxygen, avoiding most of humanity (especially during cold & flu season) and just crossing my fingers I stay this way as long as possible. My Scleroderma & Lupus are questionably stable at the moment, and my current drug cocktail is keeping me this way. But here’s the problem: I will not stay this way.
My conditions, all of them, are progressive and there are no cures for any of them. This Rare Disease Framework would open up the possibility for me to get access to drugs in the future which wouldn’t have ordinarily been used for the conditions I have, but may have recently been discovered to offer benefits for keeping me alive and hopefully an improved quality of life.
So here’s where you come in: At the end of September, this motion for the rare disease framework could finally come to fruition and I’m calling in a favour to everyone that’s offered me their help for whatever I might need. I admit, this favour doesn’t exactly fall in the category of warm fuzzies but it would mean the world to me if you could email your provincial health minister and help make this happen.
As a side note: I completely understand if this sort of political thing isn’t your cup of tea. It’s a pretty heavy & awkward favour to ask (and totally voluntary!) so don’t worry: you still have my love & adoration!
If this Rare Disease Framework is successful, you will forever have my thanks & gratitude for helping to improve my chances of living something of a “normal” life!
P.S.: If you’re one of those people that prefers to do things like making donations to organizations that are into doing research to find cures for all my diseases instead of writing, here are the two most important organizations on my list: