Bleeding Disorders Newsletter
Spring 2010
Bleeding Disorders Program
& Hemophilia Ontario
South Western Ontario Region
Bleeding Disorders Newsletter
Spring 2010
Bleeding Disorders Newsletter 6
Hemophilia Ontario – Southwestern Ontario Region
Welcome from the Chair
As a community we have reason to be very proud of the reputation of innovation, excellence and compassion for others that SWOR has earned throughout its history. I believe an understanding of our past is key to understanding where we are going. I also realize that the grassroots efforts of people in the bleeding disorders community, and our values of respect and empathy for others are what drive this organization. I am encouraged by the initiative of recent SWOR Boards and our membership. SWOR has been committed to implementing new programming which has increased our ability to raise funds and awareness, as well as provide services to people within our community. The current SWOR Board plans to continue to strive to improve our success in these areas. I feel honoured to be Chair of our Regional Board and will remain committed to strongly representing our membership. I encourage you to take advantage of the resources and opportunities available to you through the region, and also to enjoy the great company of our community. Please enjoy our spring newsletter, and I look forward to working with you throughout the year.
Paul Wilton, SWOR Chair
Farewell SWOR Board Members
It is with sadness that we say farewell to two long term Board members whose life paths take them to new ventures.
Michelle Lepera – with the diagnosis of her son Johnny, Michelle and her husband John became lifetime advocates for the society. Living in Windsor, Ontario, Michelle initially traveled to London for monthly meetings. In 2008 with technology advances, Michelle was able to participate from home creating less hassle for her and benefiting the region with her continued involvement. As life with two teenage children changes, Michelle is taking a well deserved year or two away from the board and plans to rejoin us in the future and we can’t wait. Michelle your smile, positive attitude and commitment will be missed.
Emil Wijnker – after 9 years as a local, provincial and national representative, Emil has stepped back from society involvement. Emil was elected to the CHS Board of Directors as the Youth Delegate in 2007 and served in this capacity until 2009. He has worked with Helene on many national initiatives. He served provincially as the SWOR delegate to the Hemophilia Ontario Board as well as the Youth Committee delegate. Locally, Emil dedicated countless hours to growing the region. Pinecrest Adventures Camp benefited from his dedication as a staff and ultimately as Camp Co-Director. As a member of the SWOR Board of Directors, Emil contributed to various committees and working groups and in 2009 was elected Chair of the Board. As a SWOR member, Emil attends the bi-annual member events and participates in various fundraising initiatives. A strong speaker, Emil has shared his personal story with individuals and groups in an effort to raise awareness of what it is like to live with an inherited bleeding disorder. The proud papa to Lily (2 yrs) and Ruby (3 months), and husband to Shannon, Emil will be focusing his attention on his growing family. We will miss you, your heart and dedication and look forward to the time you will be joining us again.
We also thank Nick Higgins for his participation on the board for the past year.
Regional Annual Meeting and Education Day, Saturday, March 27, 2010
Telling our Stories, Sharing our Lives - my title but one which reflects the experience of all participants who were privileged to enjoy the facilities of the London Hilton Hotel for our annual meeting. The day began with some well-planned workshops featuring Lori Laudenbach, Advanced Practice Nurse, who discussed Prophylactic treatment for bleeding disorders, incorporating the recently released video Hemophilia Heroes: Active Today and Active Tomorrow illustrating patient experiences and featuring two families from our region. Julia Sek, of Baxter Pharmaceuticals discussed Pain Management and ideas from the Passport to Wellbeing Roadmap to Managing Pain. The telling of personal stories followed, generously shared by Brad Baillie and Tammy Ouellette. It was particularly encouraging to see the number of youth participants attending, many of whom participated in leadership training in preparation for camp, provided by Mike Pearse. Paul Wilton has been training youth speakers and two of our young men gave talks about how bleeding disorders impact their lives. Clearly our future is secure with such knowledgeable and positive young people.
Adventures in Leadership was provided by Eric Sloat, a professional trainer in leadership and management, who spoke about leadership styles and characteristics of successful leaders. All of the participants were asked to consider desirable traits for leaders and managers. Mr. Sloat’s presentation emphasized that we all have something to contribute, whether ideas or a specific set of skills we can offer.
Thank you to all who planned and organized the day - it was more than I expected and a day which was thoroughly enjoyed by all.
Jennifer Crump
Approximately 50 individuals participated in the SWOR education session and Regional Annual Meeting held at the Hilton in London, Ontario. We were fortunate to have amazing speakers join us for the Adult and Pinecrest Camp Training Sessions.
Youth Speakers Bureau graduates Paul Travaglini and Ryan Kleefman shared their personal thoughts on living with hemophilia and helped us to remain focused on why we were here. If you would like to view their presentations go to http://www.youtube.com/user/HEMAblogTV you will find both presentations available for your viewing.
Hemophilia Ontario Chair Dane Pederson introduced the newly released Strategic Plan. A Committee has been diligently working on establishing directives to roll out the plan as the provincial chapter looks toward growth and re-energizing the future.
Canadian Hemophilia Society President Pam Wilton provided an overview of the 12 Strategic Directions the society seeks to achieve.
Below is an excerpt from Brad’s pain management presentation, what he calls his “Survival Tool Box”.
My name is Brad Baillie. I’m 43 years old and have Severe Factor IX Hemophilia. I’m married to my wife Lisa and together we have an eight year old daughter, Tory. I was diagnosed with hemophilia as an infant after my parents’ fears and speculations were realized. My uncle…. who became my role model and a pioneer of sorts for me…. was also a hemophiliac and my mom….unfortunately…. had gotten to grow up with his trials and tribulations. As it seems, treatment in his childhood consisted of not much more than abstinence and rest …..combined with much pain medication and distraction!
There was denial and reluctance on the part of my parents’ family doctor (at the time) to pursue their fears or test me for hemophilia. But after repeated “signs” that seemed obvious to my parents (like bruising and swelling from being in the jolly jumper) they persisted until I was tested! They also switched family doctors and found one that was willing to learn about hemophilia and become a good resource! He also went on to adapt, mentor us, and provide us the best care possible as times would change.
Once, as a toddler learning to walk, I fell on the corner of the coffee table and hit my face. You guessed it. My face swelled up like a football, mouth swelled shut, and factor replacement was not yet available. For five days, if it didn’t go through an eyedropper, I didn’t eat it. Apparently the nutrients in dill pickle juice and jello water satisfied my hunger, soothed the pain, and coincidentally kept the infection that was festering inside my mouth at bay. And the treatment staff which consisted of my parents and grandparents … alternated shifts……between chores because they were both dairy farmers. And as a reward for THEIR suffering…... I was weaned off the soother!
…. Notice how I’ve used the term “us”? I believe, in hindsight, that was my first form of “pain management”. All those around me seemed to “share” the pain as a way to minimize it for me the best they could.
…. I’ll always remember that one question that was on the questionnaire that accompanied my annual assessment by the hemophilia program. It asked how I felt about my condition. And the answer I always chose was…..”It limits me in ways I accept”….. FOR ME THAT WAS A KEY!! I was the oldest of three children in my family and like most farm families; help was not only appreciated but needed on the farm. At a very young age, I secured my place on the equipment in the fields instead of in the barn with the livestock ……..What could I do instead of what shouldn’t I do. And like all things, sometimes limits were exceeded
…..but for me it was …..and to this day still is …..WILLINGLY. I ACCEPT. I’M in CHARGE!
…. The sooner I “accept” it, the sooner I can control it using whatever tools are in my toolbox……infusions, rest, distractions, more activity, body position, focus (my wife calls it tunnel vision if she’s trying to fire me up), attitude……or any combination. Most of these are the same tools that are in your toolbox too. That’s not to say I don’t use conventional medicine. I do. I have always had a supply of Tylenol, Tylenol 3, Percocet, and the like in my medicine cabinet ….as well as usually in my pocket too. But to say those are a regular part of my diet couldn’t be further from the truth. I use those just to help get me past the initial surprise ….so to speak. When I mention “position” as a tool, have you ever tried sleeping with your legs propped in the air against a wall? It can actually be quite comfortable for a while! Trial and error…..and trust and acceptance from those around you to allow you to try in the first place!
…. It’s just part of life….my life…..and sometimes life isn’t always fair. We can’t change it….so accept it. I hold the cards…. I’m just playing my hand. Is my pain tolerance or threshold higher than normal? What is normal? Maybe it is?! But rightfully so it SHOULD be. I’ve been in training for 43 years! I’ve just had a little more practice using my tools than most have. Like an Olympic athlete, practice makes perfect. Each time we practice something, we get better at it. For me, each bleeding episode is a building block and learning tool for the next one. I’m still learning. Especially as my body reminds me that I am getting older, I constantly review the tools in my toolbox with each new bleed. I Use what worked in the past and sometimes retry something that didn’t work. I continue to go back to those around me for guidance…..more so now that I’m past my teenage years and realize that I don’t already know everything! It could be my family, my friends, my role models, or the medical crew. Each and every one of them are holding toolboxes that they want to share with me…..full of tools for me to use ….. and each with their own personal expertise attached to it. All I have to do is look in their toolbox. When I find myself with pain that I don’t seem to have a tool for, it just means I need to look in a toolbox I haven’t opened yet.
But the bottom line is this. I remain unquestionably positive and focused. I accept it. I am in charge. I am ultimately in control. What doesn’t kill me will only make me stronger. Well, guess what? I’m still here …… and I’m an athlete in training carrying an Olympic torch of sorts……so BRING IT ON. There remains to this day only 1 question that I constantly ask myself. Is the pain worth the gain? With hind sight in mind, as long as my answer can always be an honest and true YES, then I have to say …… Pain …..what pain?
Brad Baillie
Look for excerpts from Tammy’s presentation on how to help your child with pain management in the next newsletter.
Pinecrest Camp Training
This year at the Regional General Meeting we had the pleasure of having Mike Pearse lead two workshops with some of our Pinecrest returning staff, new staff and CIT's. Mike is currently the co-owner and Director of Camp Tawingo in Huntsville and has been a Motivational Speaker and Workshop Leader for over twenty years. He used his time with us to focus on how our positive actions as counselors, no matter how small can make a difference to someone else. Photo includes Mike Pearse and the Pinecrest Staff and LIT’s.
The games and activities we played got us all back into the spirit of camp and ready to learn. We then focused on specific techniques to help us become better youth leaders. Mike made a point of leading by example. Rather than telling us what to do he would show us in his tone and actions effective ways of leading a group. His sincerity was appreciated and we now feel motivated to incorporate what he provided into Pinecrest as well as our daily lives.
Genna Kusch
Thank you to Baxter, Bayer and Pfizer for their generous support of the Regional Annual General Meeting
Best Wishes JulieIt is with great sadness we recognize the resignation of long time Regional Service Coordinator Julie Serrador. Julie has been an integral part of building the regional programming to what it is today. With the help of her Cadet background, Julie whipped Pinecrest Adventures Camp into a new shape. Her involvement from the beginning with Just the Guys grew the event to what is now a tri-region fun and educational weekend. Her professionalism in all aspects of member involvement and communications raised the bar for member care and support. Having completed her school component of the Midwifery Program, Julie has decided to finish the practical placement of the course. Two years from now she will be a registered Midwife. Please join us in wishing Julie all the best as she embarks on this new life venture.
Julie is pictured with Emil Wijnker, past Chair / Terri-Lee is Back
It is with great pleasure I accepted the opportunity to return as the Regional Service Coordinator in the SWOR region. The new Board of Directors is in place and we are working to bring you a great year of educational and fun activities. If you have any ideas for education sessions, fundraisers or want to get involved, please call me at 519-432-2365 or email me at . You can help us all make a difference within our community.
Four Free Youth Tickets to Beauty and the Beast