Sunday, January 30, 2011

New and Improved?

So, one of the things that have been on my mind since the report on Canada's blood system.
First of all, I think the report should show A+ in every category. This is our blood system we are talking about. There is absolutely no room for error. I think for the most part, people don't think about the importance of blood safety. But just because you aren't a Hemophiliac doesn't mean you won't need blood at some point in your life. Blood transfusions are used for patients who suffer from cancer, injury, major surgery, child birth or a car accident. So you see it's something that concerns everyone.
I was happy with most of the report except for the part about Plasma. The following is a section fo the press release from the Canadian Hemophilia Society.
"The provinces and territories continue to fund the suppliers of blood, blood products and their alternatives in such a way that they can provide life-saving products to Canadians in sufficient supply… with one exception. Solvent detergent treated plasma (SD-plasma) is still unavailable, despite licensure by Health Canada in 2006, a lower risk of blood-borne pathogens and adverse reactions compared to fresh frozen plasma, and the fact that SD-plasma is the standard of care in many European countries."
I have been using Fresh Frozen Plasma for about 27 years. Luckily I have had no problems with plasma in terms of blood born pathogens but I have had many allergic reactions to the plasma including, hives, difficulty breathing and seizures.
So if this SD plasma is better then of course I would like take it but it's a hard decision to make, it's not like trying out a new lipstick. This decision will have a huge impact on my life.
At the moment, I feel as though I do not have enough information to make a decision.
I've been reading a lot of articles and it seems like they are not 100% which one is better either. For example, in the case of the SD plasma so of it its powers (for lack of a better word) are lost.
The FDA has approved SD plasma, and some studies how that it is better, but as Hemophiliacs we have learned the hard way that you can't always believe what you read and what you are told is safe.

Thursday, January 27, 2011

Report Card on Canada's Blood System

So, Today the report on Canada's blood system was released. Some parts are quite concerning to me since I used Fresh Frozen Plasma all the time.
There are some points I will be discussing with my doctor but for now I would like to share the report with you and see what you think. For the full report visit




Montreal – January 27, 2011 – The 2008-2010 report on Canada’s blood

system, prepared by the Canadian Hemophilia Society (CHS), has found that

blood, blood products and their alternatives are very safe and in sufficient

supply; however, the system’s accountability to recipients has taken a giant

step backwards.

According to Canadian Blood Services (CBS) by-laws, and following

recommendations of the 1997 Krever Report on Canada’s Blood System, two of

the 12 CBS Board positions are reserved for persons with “relevant knowledge

or experience with organizations representing persons consuming blood and

blood products.” Over the last decade, almost all of these positions have been

held by individuals with very close links to recipient organizations and

extensive knowledge of safety and supply issues. However, during the 2009

and 2010 Board renewal process, the Members of CBS, the provincial/territorial

Ministers of Health (except Quebec), named both “public directors” with no

apparent links to recipient organizations and little knowledge of key issues from

a recipient perspective. A number of recipient organizations have denounced

the selection process as lacking transparency and resulting in the exclusion of

an effective recipient voice at the top level of decision-making at CBS… to no

avail. David Page, CHS national executive director, said, “Members of recipient

organizations see their exclusion as a clear contravention of CBS’ own by-laws,

and a giant step backwards in accountability.

Meanwhile, Héma-Québec has maintained Board positions for individuals with a

recipient organization perspective.

On a more positive note, the report finds that CBS, Héma-Québec and Health

Canada (the regulator of the blood system) have maintained a clear focus on

safety. Blood and blood products are safer today than at any time in the past.

The provinces and territories continue to fund the suppliers of blood, blood

products and their alternatives in such a way that they can provide life-saving

products to Canadians in sufficient supply… with one exception. Solventdetergent

treated plasma (SD-plasma) is still unavailable, despite licensure by

Health Canada in 2006, a lower risk of blood-borne pathogens and adverse

reactions compared to fresh frozen plasma, and the fact that SD-plasma is the

standard of care in many European countries.

The September 2010 decision by Justice Aitken of the Ontario Superior Court in

the case of CBS vs. Freeman was welcomed by recipient organizations. The

judgment found that current donor deferral criteria for men who have had sex

with men are not discriminatory. As a result, decisions on screening procedures

will continue to be made on the basis of the latest science and epidemiology.

The period covered by this report also saw the adoption of legislation in

Quebec to provide no-fault compensation in the event that persons are injured

by blood or blood products. Such a measure was the first recommendation of

the Krever Commission. The other provinces and territories are relying on CBS’

self-insurance scheme to provide compensation in the event of another tainted

blood tragedy.

Unfortunately, the last three years have seen little progress in the development

of a national Orphan Drug Policy that would facilitate the licensure and

availability of therapies for rare diseases. Canada is the only highly developed

nation without such a policy.

In addition, the Public Health Agency of Canada has, without notice or

explanation, stopped funding the Blood-Borne Pathogen Surveillance Project at

the University of Alberta. This bank of blood samples from frequently transfused

individuals is critical to effective monitoring of emerging pathogens in the blood


The 2008-2010 Report on Canada’s Blood System is the fifth to be released

since the reform of the blood system in 1998 following the Krever Commission.

In its preparation, the Canadian Hemophilia Society sought input from recipient

organizations, Health Canada, manufacturers of fresh blood components,

Canadian Blood Services and Héma-Québec. The 2008-2010 report card and

the four previous report cards can be found on the CHS Web site at in the Safe, Secure Blood Supply section.


Founded in 1953, the Canadian Hemophilia Society (CHS) is a national

voluntary health charity. Its mission is to improve the health and quality of life

of all people with inherited bleeding disorders and ultimately to find a cure. Its

vision is a world free from the pain and suffering of inherited bleeding


- 30 -

Sunday, January 16, 2011

Do you invite Hemophilia to your wedding?

So, we have been engaged for about 5 years now and it's finally time to start planning the wedding!
I have been planning my wedding since I was about 12 years old. I know exactly what I want. A big wedding in Stephenville, Newfoundland with tons of food, wine, flowers and friends. The only problem with that is weddings are very stressful to plan and Zane and I are concerned with my health. Travelling to Newfoundland is hard on my body and with the stress of a wedding we are afraid I may get sick. The other problem is the budget. Weddings are so expensive  so for the past few months I've been trying to down size my dreams for my wedding. I can cut down on some of the people and I can cut down on the flowers but I have no idea as to how I can keep myself healthy! I've been eating well and taking lots of vitamins but I can't guarantee that I will be healthy on my wedding day. Zane suggested we change to wedding to Calgary that way if I run into any health problems I have my whole medical team here. However, my heart is in Newfoundland! I was born and raised there and think it is fitting to be married there. But as I have learned the hard way as many Hemophiliacs have, you can't always get what you want. So when it comes to my big day I think I will have to ensure my close friends and family are there and enjoy the day no matter where or when it is!

Saturday, January 8, 2011

I love you Stephenville!

So, I am home safe and sound at our place in Calgary! It's good to back in our own home and to be reunited with our dog Lily. However, it broke my heart to leave my Stephenville. I absolutely love it there! It's so nice to go down town and see people you know and have people smile at you even if they don't know and hold open doors for you. It's also wonderful to be around my family. Even if it's just getting together it's so comforting to be around family. Zane and I have decided to settle in Calgary simple because he has great work here and because of the Hemophilia clinic. The people in the hospital in Stephenville are great, but they don't have the services that are available for me here in Calgary. I guess I have to be content on spending lots of money on flights and phone calls!
In other news, I got a Apple iPhone 4 Black Smartphone 16GB for Christmas! It is one of the best gifts I have ever received! The other awesome gift I got for Christmas was a baking pan from Charlie. He bought it for me before he died and I was so happy to get it.
Now that Christmas is over, reality has set in and I am working on loosing weight and finding a full time job! Wish me luck!

Monday, January 3, 2011

Happy New Year

So, it is officially 2011 and I am happy to say that I am healthy (for the moment).
I pray that this year is a happy and healthy year for me and my family as 2010 was a complete nightmare.
I have a lot of things to look forward to this year, my mom is coming up to visit me in Alberta, I am planning my 10 year high school reunion in August and Calgary is hosting a very large hemophilia conference in May which I am really looking forward to. I am also hoping to find a new job when I get back to Calgary so hopefully this year will be a good one.
My resolution this year is to lose weight, I feel like I say that every year but this year I am going to try and focus on my over all health which means exercising more and eating healthier.
It will certainly be a challenge but I feel like I am finally up to it!
What are your New Years Resolutions?