Rendez Vous 2011 By Jenny Ruklic

So, I already talked about how I loved Rendez Vous 2011 but this blog is also about getting other peoples perspectives on things so the following post is by Jenny Ruklic my friend, Founder and President of Carter's Quest for a Cure, Hemophiliac Mom, Secretary for the Calgary Chapter of the Canadian Hemophilia Society, Parents Empowering Parents program facilitator and all around great person. If you would like to learn more about Jenny please visit http://cartersquest.weebly.com/.
Well to say that Rendez Vous was amazing would not be giving it the justice that it deserves. The weekend weather may have been dismal but the events on the inside of the Delta Hotel Calgary were amazing and inspirational.

This was my first time attending the Medical Symposium and the Events of Rendez Vous and was just glad that I had a guided tour through the events with a pro like Susan Anderson. I arrived Friday morning ready to meet new people and learn all that was offered. The sponsors had a fantastic room set up with the usual swag and new ideas and products that they are bring to the market. It was a room filled with great energy and excitement for the day’s events.

The Medical Symposium was held in the banquet room where an estimated attendance of 300 people. The Morning agenda was insightful and educational dealing with the popular topic of aging. Or as Dr. Karen Fruetel had put it the Silver Tsunami. For the population of our Bleeding community it was a real eye opener to see all the different things to think about. The afternoon’s events were geared towards Rare Inherited bleeding disorders where our very own Ryanne Radford sat on the Panel and explained to the full room what it has been like to live her life as a Factor 5 Hemophiliac. The insight that they all shared was great and it was hard not to be emotional with the Mother of the 15 year old boy who has the rare disorder of Factor XIII. The end topic of the Symposium was dealing with Mild Hemophilia and the struggles that they are having. Mild is a term that should be changed, as it does not give these people the justice that they deserve. They tend to suffer in silence as they may or may not bleed the same as a Severe. The medical teams across Canada are striving to change this, as well as make sure that our women that are carriers are also acknowledged. The Panel was a group of amazing young men and a mother all with the same goal, dealing with life as a member in the community with a Bleeding disorder.

The next day there were many meetings and gatherings of all the different aspects of the CHS. The Board of Directors met and continued to make decisions that will affect all of our chapters in the next year. The final part of the day ended with an amazing banquet filled with great food, drink, dancing and friends. Many people were awarded recognition awards. There was time set aside to remember all of the inspirational people that were unable to attend the event including Ken Poyser. The NAR and the SAR’s Carter’s Quest for a Cure were able to make a very impressive Donation to the Million Dollar Club. To say the weekend was great would not give it justice.

Rendez Vous 2013 will be held in Winnipeg Manitoba and we hope that we will see many of you there.

My First Video

So, here is my 5 minute talk on what it is like to live with a rare bleeding disorder. You can watch it here http://www.youtube.com/watch?v=U6BfpOYtKs8 on youtube!

A wonderful night

So, I have to say that Rendez Vous Calgary was a success! There were more than 340 participants including my Dad, Step mom, Mother in law, Zane and Zane's uncle! It was nice to have my family there with me I have to say, honestly, I think it was the best part of the whole weekend. I was involved in a panel discussion about living with a rare bleeding disorder. Although public speaking isn't my best quality I still really enjoyed it. I also got to meet a lot of really nice people who I will never forget. It was announced that the next Rendez Vous will take place in Winnipeg in 2013. I am already really looking forward to it. This experience also gave me the opportunity to talk about my blog which I really hope will grow to eventually include more followers and more posts from different perspectives. Over the next few days I hope to touch on a few of the highlights of the weekend, including biographies of some of our great volunteers and more about my favorite doctors.



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.

Bleeds

So, at the moment I think I have a bleed in my right arm. I am praying that it is just sore from sleeping on it funny or something like that but it's very sore and it hurts to try and even do my hair in the morning.
I am praying I wake up and it's all better! Needless to say this will be a short blog post! Thanks for reading.

High Scool Reunion

So, as I have mentioned before my 10 year High School Reunion is coming up! I was really looking forward to it and I have been on the planning committee for the past year however, since the reunion is in August and I just started a new job I don't think I will be able to make it.
I am disappointed but thats how it happens sometimes. Here is an article that appeared in my hometown Newspaper.

While they’ve gone their separate ways through the years, members of the Stephenville High class of 2001 are eager to reunite and catch up on what they’ve all been up to.


“We are really looking forward to this event,” said Ryanne Radford. “Some people we haven't seen in 10 years. It's going to be a lot of fun.”

Ms. Radford is helping to organize the reunion, along with Karla Benoit, Penny McIsaac and Laura Flynn.

About 50 graduates have confirmed their attendance, which is slated for Aug. 5 to 7 in Stephenville.

Events include a pub night, a dinner and dance, a barbeque and family games day, and a bonfire along the beach at Port Harmon.

Some people we haven't seen in 10 years. It's going to be a lot of fun.” - Ryanne Radford

“Three students from our graduation class have passed away so we are inviting their families to attend on their behalf,” noted Ms. Radford. “We are also inviting our former teachers to attend the (dinner and dance) event.”

The committee has set up a Facebook event page, where former classmates are conversing about the reunion.

“Wow! You guys are on the ball. This is awesome. If I can help out in any way, let me know,” wrote Allison Basha on the webpage.

Ms. Radford replied that she needed help with the pub event. By Chris Vaughn The Georgian. http://www.thegeorgian.ca/News/2011-05-11/article-2496452/Former-Stephenville-High-students-planning-reunion-/1

Mother's Day

So, today is Mother's Day. I have mixed feelings today because well first of all I have the best mother in the world. I think there should be an extra special day for mother's of Hemophiliacs. It must of been so stressful for her to have sick child I can't even imagine. I have discovered that no matter how many cards and flowers and gifts I send her it will never be enough to thank her for all she has done for me over the years. As I child on special occasions I would always take something mom already owned and wrap it up for her she would always say how much she loved it and acted like it was the best gift she ever received.

Now I live in Calgary and I can't always get home to celebrate Mother's Day with my mom. I sent her a gift certificate and flowers but it wasn't the same. I really wish I could be closer to her but I know I can't live in Stephenville because of the medical system there. My health care is much better here in Calgary and the fact that I have to be so far away from my family makes me sometimes resent my Hemophilia.