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CHS-MC Membership Drive
Register you and your family for the first time or register to update your information via the online form in Member Services. Why should you register or update your information?
Thank you to the Manitoba Bleeding Disorders Program (MBDP) for partnering with the Chapter by mailing out a letter of invitation to people seen by the MBDP. Members who are not seen by the MBDP are encouraged to register through the Chapter website. The online CHS-MC Member Registration Form can be found in Member Services. If you require a paper form, please call the office at 204.775.8625 or email info@hemophiliamb.ca.
Prizes!
All registrations received before August 31st will be entered to win a $300 Esso gift card. The earlier you get your registration in, the more chances you have to win! More draws in November 2022 and February and May 2023!
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18th Annual Gala Dinner a HUGE Success!
Thank you to our sponsors, donors, chefs and guests for making this a successful event! We are pleased to report that the 2022 Gala raised more funds for programs and services than in many previous years! The annual Gala Dinner would not be possible without the dedicated group of volunteers. All the Gala Photos are now available on the Gala website!
2022 Gala Committee
Back row left to right: Jeff Regan, Shane Keilback, Janet Bishop, Cory Prestayko, Jason Oltrop
Front row left to right: Dana Beljanic, Lynda Regan, Christine Keilback, Danielle Figler
Missing from photo: Silvana Moran, Marilyn Decker, John Rogasky
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Members Connecting Over Ankle Fusions
Recently the Chapter was contacted by two members who were preparing for an ankle fusion. They asked if the Chapter could connect them to someone who has experienced the procedure. We were able to put them in touch with one member who had both ankles fused and another member who had one ankle done.
Our members waiting for their surgeries were really grateful for the opportunity to talk to someone with a bleeding disorder about what to expect. They asked questions about pain, recovery and the big question; was it worth it? Both of our members have had their ankle fusion surgeries now and are well on their way to recovery.
Peer support is one the benefits of membership. Staying in touch with other Chapter members keeps us from managing our bleeding disorders alone. If we can't find a local member for you to talk to, we will reach out to other Chapters. We are all in this together!
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New on the Chapter Website!
The Women and Girls Advocacy committee has assembled trusted bleeding disorders resources for clinicians in the community. This includes guidelines for the diagnosis of Von Willebrands disease, infographics, and assessment tools for patients. Clinicians can access the resources through the online order form. Members are welcome to also order any posters or resources you would like for yourself. We would be grateful to members who are willing to talk to your primary care physician or friends and family in healthcare about this opportunity.
Have a look at the new webpage Resources for Clinicians: Women and Girls With Inherited Bleeding Disorders.
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Buzzy: Needle Pain Relief
Thanks to a very generous donation by a Chapter member, we are offering “Buzzy” to members who are having trouble with pain associated with venipuncture or subcutaneous medication delivery. The Manitoba Bleeding Disorders nurses are familiar with Buzzy and we have one pediatric member who has found Buzzy to be extremely helpful with their treatments.
Buzzy uses natural “gate control” pain relief by confusing the body’s own nerves, thereby dulling, or eliminating sharp pain. In the same way that rubbing a bumped elbow helps stop the hurt, Buzzy controls sharp pain. The premise is that when nerves receive non-painful signals such as vibration or cold, the brain closes the gate on pain signals.
The second part of Buzzy’s efficacy, and the reason it can help even when distant from the site of procedural pain, is called Descending Noxious Inhibitory Control, or DNIC. DNIC is another effective mechanism of pain control that uses the brain’s ability to dampen out unwanted signals. Instead of happening right where the nerves are, though, an intense degree of cold can work anywhere on the body. In scientific terms, intense cold activates a supraspinal modulation raising the body’s overall pain threshold.
If you would like a Buzzy, please contact the office at info@hemophiliamb.ca or call 204.775.8625 and we will send a Buzzy to you!
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Planning for the Summer!
Are you looking forward to summer holidays? While preparing for holidays don't forget to plan for your bleeding disorder too! Here is a list of things that can help make a bleeding episode on holidays a little easier: travel letter from the Manitoba Bleeding Disorders nurses, Factor First Card, treatments for prophylaxis, extra treatments for a bleeding episode, any extra medication you may be using (Celebrex, tranexamic acid), home management supplies for all treatment scenarios, medical id jewelry. In a pinch you can find the Manitoba Bleeding Disorders Program contact information in Contact Us on the Chapter website.
Did we miss something you find helpful? Send us a message: info@hemophiliamb.ca.
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Bayer Hemophilia Hub
The Bayer Hemophilia Hub includes product information, downloadable tools and resources, and safety information for both Jivi and Kovaltry. The site hosts a patient portal, accessed using Jivi or Kovaltry DIN numbers. If you require support accessing the site, reach out to your HTC for support.
Contact the Chapter if you would like more information. We can email you an info-postcard with more details!
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WFH 2022; Life with hemophilia after gene therapy
(from the Peruvian Amazon)
Luke Pembroke shares his experience at WFH 2022 Congress
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Thank you Chapter Update Sponsors!
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