Thursday, May 19, 2011

Conference Presentation

So, Rendez Vous Calgary is coming up in just over a week. I am really looking forward to it as I have been asked to speak at it this year. This conference takes place every two years in a different locations across Canada. I am really happy to be presenting the following talk to patients and health care practitioners.

I was born and raised in a small town in Newfoundland. It was there that I diagnosed with Severe Factor Five Hemophilia at seven months old. My diagnosis came about after I hit my head and developed a large hematoma on my head. It took a while for me to be diagnosed because I have no family history or Hemophilia. My mom and Dad are healthy and I have two healthy sisters and lots of healthy cousins. Over the past 28 years I have had bleeds into my joints and muscles but today I would like to talk about my most major bleeds. When I was twelve years old I started my period and began having lots of problems, it would not stop and I began loosing lots of blood. I began getting treated with 4 units of Fresh Frozen Plasma once a month which worked for a while until I developed ovarian cysts which ruptured and bled into my abdomen. This was a major bleed and I spent almost a whole year in the Janeway Children’s Hospital in St. John’s, NL. I was treated with more than 100 units of fresh frozen plasma. The doctors contemplated a hysterectomy but felt it was too aggressive. They tried several which imitated menopause and caused me to have some very interesting symptoms but I was still having some bleeding so I eventually tried the birth control pill which seem to work perfectly. My other major bleeds have been into my iliosopas muscle. I have bled into this muscle several times and each time it seems to quite a large bleed. My most recent ordeal was in December of 2009 I was admitted into the Foothills Hospital in Calgary for an iliosopsas bleed. I was told that the bleed was quite large and was on bed rest for an entire month. Needless to say it was the worst Christmas ever! But I did get lots of presents whether or not that was because I was in the hospital we will never know!


Since moving to Calgary I have been blessed with a great Hemophilia Treatment Centre and I would recommend to all Hemophiliacs that if they do not live in a city with an HTC they should move as it is a great resource. Over the years I have had great Hematologists including Dr. Jardine, Dr. Poon, Dr. Ritchie, Dr. Jackson, and Dr. Acktabodo and Dr. Goodyear.

The best and only treatment for me seems to be Fresh Frozen Plasma however I pray that they come out with a concentrate some day.

The best treatment I have received is just having a doctor who will listen to your concerns and treat you like a person and not just another number.

Currently I work full time as a Marketing Coordinator in Calgary. In my spare time I am volunteer with the Hemophilia Society, and have started a blog called HEMOPHILIA IS FOR GIRLS, So far I have 85 followers and have been featured in three American publications. My blog is most popular in Canada, USA and India.

3 comments:

  1. Hello !
    I like your blog :)
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  2. That's an excellent speech that you're giving, it's very admirable for you to get up and tell your story like that.

    Good luck to you at the conference!

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  3. Thank you so much Menchu and Jonathan! I am really looking forward to it and I really appreciate you reading my blog and taking the time to Comment!

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