Rare Disease Day What Does It Mean In Canada?

Today is Rare Disease Day, which is a world wide event and is celebrating its 10th anniversary this year.  Sadly in Canada this day doesn't mean much, even though Canada has been taken part of Rare Disease Day since its 1st year according to the website. Rare Disease Day

Unlike other countries who have many organizations representing people living with rare conditions, we have one organization in Canada to represent all Canadians living with a rare condition.  I have monitored the CORD organization for many years now.  I even contacted them a few years ago, but they are not interested in helping a condition such as the one I have.  Which makes me question their mandate for saying they represent All Canadians with rare conditions? Yet they pick and choose which ones they are supporting? 

If your mandate is all then why don't all conditions count? As it was explained to me if my condition had an official organization then there would be more they could do, there are many rare conditions who don't have an official organization I thought that was the purpose of CORD to be the voice for all, especially those that don't have an organization for their condition?  If it just me that is confused by that responds?

I also look each year at the cities that participate  in Rare Disease Day in Canada hoping to see more doing so each year. We have 10 provinces and 3 territories with a total population of 36,626,083 last time I looked.  Another statistic if you are interested 1 in 12 persons in Canada fall under the rare disease category according to Health Canada's Website on Rare Conditions.  Yet only two provinces participate in any sort of representation of Rare Disease Day, Ontario and BC.  And in a very small way.   

When I tried to contact our local organization for Manitoba's who live with disabilities as some know they could not even answer a simple question as to what they do and what programs do they offer as per their website.   Never mind asking them to help championing our city or province to acknowledge Rare Disease Day.  I am only one person who can't even reach others who live with rare conditions, due to privacy issues.  If someone knows how to make this happen please enlighten me.  My letters go unanswered, I have contacted our government, the College of Physicians, and my city's area councilor.  But I guess we are not important enough but someone has to take up the cause and I will keep fighting until I no longer can. 

Maybe to the average person reading this this might not mean much.  I'll be honest until I became a person who falls into this unfortunate category I too never gave it much thought, other than thank god I was an able bodied person.  We care more about what the latest celebrity is doing.  Where our friends and family are going on holiday's.  Or other situations happening in other countries.  

So today I am asking you instead of talking about the regular conversations you may have. Why not have a conversation regarding rare disease's. There are depending on where you look between 6000 to 7000  known rare conditions in the world.  Why not talk and learn about at least one today.  I'll help you out you can learn about Stiff Person Syndrome (thank you to all my friends who send me information but yet never read the information  yourself you can help me by reading it yourself I live with it every day and am well aware of how it affect my life), Isaac Syndrome, Sclerodema or one of the countless others.  Make today the day to learn something new and maybe help in understanding someone, you or spouse or children know.    

Maybe next year I can get someone to care enough about those of us in Manitoba living rare to acknowledge us for one day! Surely with a population of 1,208,912 and 1 in 12 living with a rare condition then one day for us is not such a big ask?

Celebrate Rare Disease Day!

Here is a list of the events our wonderful county is doing!  So proud of all we do (she says in jest)! Canada let's truly live up to the slogan of Alone we are rare. Together we are STRONG!  http://www.rarediseaseday.org/event/canada/1678

In Memory of my friend Danielle and Missing Your Friendship

Today will mark the anniversary of my best friends passing.  She passed away in 2012 seems like a lifetime has passed since I found out.  She had moved away to BC and when she called me asking me to come visit her, and if possible within that month. She did not tell me how sick she was, she told me she was unwell but not to worry about her.

I told her at the time I did not have the money as we had booked our honeymoon cruise finally after saving up for a few years and we were leaving in two weeks time. (at the time I was still healthy and working).  She was very gracious and asked then would I be willing to come in the spring or summer. I told her at that time nothing would stop me from coming out, and to stay strong and keep fighting like she always did in with her life and I would see her then.  Little did I know that would be the last time I would speak to her.

We went away on holiday and when I got home I tried to call her, getting no answer.  I also sent her a message that went unanswered.  At the time I thought nothing of it nor did I bother looking on her home page as she posted so little.  As the week passed and still no answer it made me start to worry. But at the time I myself was not feeling well which was the week I discovered I had a blood clot in my leg.

Strangely that same weekend two days before I did finally go to the hospital. On Saturday I kid you not I heard a knock on our bedroom window (we live on the 15th floor) so a knock on our window was impossible.  I thought to myself that was weird and I must have been having a dream I could not remember the rest of.  When I got up something told me to look on her home page on social media.  It was there where I saw the posts saying rest in peace, we'll miss you and all other sentiments people say when someone passes.  Shocked to say the least, she had passed away while we were away.

Sadly none of those people knew me and I was not made aware she had passed, she and her family were estranged and her new friends did not know me.  Not a pleasant way to find out, from a bunch of strangers writing on one's wall, that someone you considered a good friend had passed.  At 1st I was angry because she did not tell me how sick she was, and was dying.  But then I realized she had used our conversation of seeing each other in a few months as something to look forward to and maybe that would keep her fighting.  At least that gives me comfort in that thought whether or not it was the case. But I do believe people make plans etc in the hopes it will keep them strong.    

I reach out to a few people who had written on her page, and finally one of her friends did message me back to tell me Danielle had past away as peacefully one can from cancer.    The friend who reached out to me actually was the one that was with her as she took her last breath and that too brought me peace.

Now a lot of people have many friends.  I have a few, but none as close as Dani and I had been. I did not grow up in this city. Most people here went to grade school and still hang with the same people as adults, and makes it a bit hard to open up their circle to new people. They have history and know all about the people they hang out with from a very young age.  For those that know I grew up an army brat back in the days where they moved families all the time.  I lived here for Grade 9 before we were posted again but always came back here because my parents had bought a house here, hence how I ended up living here when my dad retired from the military.

When I moved here the second time a co-worker at the time, invited me to a party and that is the first time I met Dani as I always called her from the moment we met.  How we became joined at the hip was before she came people were talking about her and not in a kind way, but in a very cruel way which I will not repeat. Anyone who truly know me will know I hate and will always stand up for others even in my condition to this day, I have no tolerance for people talking about others especially in a cruel and mocking way, like they were.

When I asked why then was she invited it was because she had gone to school with them and didn't want her to know they had gotten together and not invited her.  Which is what I mean by the mindset of the people that live here.  No disrespect even if you feel I am being that way but why as adults do you still behave as if you are still in school and feel that you cannot pick and choose who you speak or hang with on your own?  It's not like you will see that person at school on Monday.  

Dani and me meeting for 1st time I'm in the sweater with the hearts and Danni is the girl with long hair

I have a lot of time to reflect back and think of people who have come and gone in my life. And for some reason Danielle has been in my thoughts quiet often these days.  Mostly because she and I always were there for each other.  She could call me at 2 A.M. on a work night and I would answer the phone and vice-versa which happened from the time we were 18 and met no matter where each of us were living.

Why am I writing about this and not my illness (which is what my writing is mostly about, but this does have to do with illness because we all could use our best friends in good and bad times.) I wanted you to know Danielle I miss you, I could use a good friend like you were again in my life. I miss our late night calls when life is going crappy and we just needed each other. Thank you for the memories that I can still laugh about the trouble we got into. It brings glimpse's of happiness to me looking back on our friendship during my darkest days. Thank you for being a part of my life. And lastly because I never had the chance please accept my apology for not being there in person when you needed me most.

Love you my friend, until we meet again.

If I only I had known the change that was coming. 

https://youtu.be/YDTei_wdm3U