Every little bit helps in the fight against Inflammatory Bowel Disease (Ulcerative Colitis and Crohn's Disease) and Primary Sclerosing Cholangitis. Researchers and doctors are scrambling to try and uncover why auto-immune conditions are on the rise, why they affect certain people and not others, and how best to combat them. In my experience with Crohn's Disease, all of the medicinal therapies proved ineffective (if not outright useless or more damaging to me than the IBD itself) and I was forced to have my colon removed before I could leave the hospital. My experience with PSC, I am afraid, is just in the awkward "how are you?/what do you do for a living?/how are you going to ruin my life today? stage" with plenty of surprises still to come...
And while I think I am great and the centre of the universe (my friends and family can attest to this), I am also not the only one facing these diseases, nor am I experiencing the worst that these diseases can offer (knock on wood...). Over 233,000 Canadians (that's 1 in 150 people) have IBD and the toll this takes on them, their family and friends, and other support systems can be immense. There is no indication that there is a gender, racial or geographic bias in the contraction of IBD, although there is a higher incidence rate in people of European Jewish descent, and in people aged between 15-25 and 45-55. There is a higher prevalence of cases reported in the Northern and Western world and Canada has one of the highest incidence rates of IBD in the world. Alarmingly, the number of children under 10 who are being diagnosed with the disease in Canada are significantly on the rise.
Yes, important advancements are being made every day and, yes, by and large these diseases (particularly IBD) are not fatal. People live with them, through them, in spite of them, every single day. But, speaking from my experiences alone, I can attest that it's rough. The drugs, the hospitals, the surgeries, the IVs, the reactions, the side-effects, the isolation, the humiliation that comes with diseases afflicting such private parts of you, the forced concessions to a "new normal"... they are all difficult. A challenge. Sometimes impossible.
So, if you're looking for a way to help, here are some organizations that could use your time, your money, your blood or (more drastically) your body parts. This list is not intended to be gruesome, but in addition to the more traditional avenues for donation and volunteering, I have also included more specific and dedicated areas of potential contribution. Please note that this list is not exhaustive and I am sure that there are plenty of other organizations out there that are doing great things everyday.
Crohn's and Colitis Foundation of Canada
Online Donations: http://www.ccfc.ca/English/involve/giving.htmlVolunteer Opportunities: http://www.ccfc.ca/English/involve/volunteering.html
http://www.liver.ca/
Online Doncations: http://www.canadahelps.org/CharityProfilePage.aspx?CharityID=s2220
Volunteer Opportunities: http://www.liver.ca/Volunteering/
United Ostomy Association of Canada
Online Donations: http://www.ostomycanada.ca/donations
Gutsy Walk (formerly the Heel'n'Wheel-a-Thon)
(Annual Fundraiser for the Crohn's & Colitis Foundation)
(FYI - the next event is being held on Sunday June 9th, 2013. My family, friends and I will be participating as part of "Team Crapbag." We'd love your money...er, or your help!)
Canadian Blood Services
1-888-2-DONATE (1-888-236-6283)
(1 in every 2 Canadians will either need blood in their lifetime or will know someone who does. So, now that you know me: give it up for Crapbag! One donation can save up to three lives and you can donate every 3 months -- that's 12 lives a year!)
Trillium Gift of Life Network
I realize that this is not for everybody; but until I began looking into the mechanisms and procedures for liver donations in Ontario, I had no idea what advancements had been made in the last ten years for people with my disease (for example, the Living Liver Donation Program). I also did not know that indicating that I wanted to be a donor when I renewed my OHIP (Ontario Health Insurance Plan) card or Driver's License was not enough to guarantee that my wishes would be respected by either my family or the Ministry of Health. (Apparently the joke's now on me, though, because I cannot imagine that there is much in or on me that is in sufficient working order so as to be able to donate anything...)
And last, but certainly not least, if you want to help people like me, you can eat BBQ!
M&M Meat Shops - Charity BBQ for the CCFC
www.charitybbqday.com/home.asp
Online Donations: https://secure.ccfcfindthecure.ca/DonateGen.aspx?L=2&CCID=51&MSP=540
M&M Meat Shops is one of the CCFC's largest sponsors. In 2012, M&M hosted its 24th annual BBQ to raise funds for the CCFC; they raised an impressive $1.6 million for research and programming to help improve the lives of those diagnosed with IBD. At the BBQ (usually held on a weekend in May) every cent raised is donated and for a minimum of $2.50 you can get yourself a delicious hamburger or hotdog, a drink and a bag of chips. (For other CCFC-related fundraisers throughout the year, please visit http://www.mmmeatshops.com/)
If you know of any resources that you feel would be an appropriate addition to this page, please feel free to email me and I will look into ASAP. Cheers!
While I may come knocking on your door one day trying to hunt up a liver, today is not that day. Other people, however, need livers (and kidneys, and lungs, and hearts) right now. The Gift of Life allows you to register your consent to donate organs and tissue following your death. Additionally, they also provide talking points to help have this difficult conversation with your family so that your wishes can be known and expressed. In so doing, you will be giving your family and friends an opportunity to help you save lives and improve the lives of countless others: one organ and tissue donor can save up to 8 lives and help up to 75 more. There is also a mechanism for donating your body to medical schools and scientific research, to further help clinical trials and medical students who may one day cure IBD, PSC, cancer, heart disease and all of the other plagues of the modern world.
I realize that this is not for everybody; but until I began looking into the mechanisms and procedures for liver donations in Ontario, I had no idea what advancements had been made in the last ten years for people with my disease (for example, the Living Liver Donation Program). I also did not know that indicating that I wanted to be a donor when I renewed my OHIP (Ontario Health Insurance Plan) card or Driver's License was not enough to guarantee that my wishes would be respected by either my family or the Ministry of Health. (Apparently the joke's now on me, though, because I cannot imagine that there is much in or on me that is in sufficient working order so as to be able to donate anything...)
And last, but certainly not least, if you want to help people like me, you can eat BBQ!
M&M Meat Shops - Charity BBQ for the CCFCOnline Donations: https://secure.ccfcfindthecure.ca/DonateGen.aspx?L=2&CCID=51&MSP=540
M&M Meat Shops is one of the CCFC's largest sponsors. In 2012, M&M hosted its 24th annual BBQ to raise funds for the CCFC; they raised an impressive $1.6 million for research and programming to help improve the lives of those diagnosed with IBD. At the BBQ (usually held on a weekend in May) every cent raised is donated and for a minimum of $2.50 you can get yourself a delicious hamburger or hotdog, a drink and a bag of chips. (For other CCFC-related fundraisers throughout the year, please visit http://www.mmmeatshops.com/)
If you know of any resources that you feel would be an appropriate addition to this page, please feel free to email me and I will look into ASAP. Cheers!
