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In this issue ...

Welcome from Milena Pirnat, Bralette; How I Learned to Love the Bra Again, Carrier testing for Women, Refresh your PPE, Let's Talk Period, New WFH VWD Guidelines, 


By Milena Pirnat, CHS-MC President

I am excited and proud to announce that our Chapter’s Women and Girls with Bleeding Disorders Committee has initiated this first newsletter!

I have been working with Chris in helping women with bleeding disorders to access care and in 2019  this was a significant victory for the Chapter. I also worked on few Code Rouge projects; the first survey that included women with bleeding disorders and we organized education sessions specifically tailored for women. We worked hard with the Hemophilia Treatment Centre to negotiate better care for women with bleeding disorders. None of these events comes near to my excitement and privilege to be able to announce that our first Women and Girls with Bleeding Disorders Committee is up and running and that after our first meeting on December 2020 it prepared an action plan for 2021. This plan entails support, education, and raising awareness about women and girls with bleeding disorders in Manitoba through our local clinics in Winnipeg.

Although the issues  facing women with bleeding disorders has been on the back burner for years, and the scientific community was slow to catch up with the issues, things are changing for the better on the national and global level. Last year the first ever World Federation of Hemophilia (WFH) Global Summit on women & girls with inherited bleeding disorders was organized by WFH and the National Hemophilia Foundation (USA). Dr. Sidonio is one of the leading scientists  who has piloted studies focusing on quality of life and menstrual bleeding treatment in hemophilia carriers and women with low von Willebrand Factor (VWF), and was a presenter at the summit. The issue is now being studied actively and in the years to come we will be receiving scientific news and results on these topics. At the same Summit, new VWD guidelines have also been introduced by Dr Paula James as one of the leading scientists  studying  VWD in Canada and the world. She is the Medical Director of the Inherited Bleeding Disorders Clinic of Southeastern Ontario and it is affiliated with the Women and Bleeding Disorders Clinic.

Here in Manitoba we have too often heard hemophilia carriers labeled as, “just a carrier”.  Women’s bleeding issues and the problems that arise from them are being recognized more now as women are more frequently being diagnosed as having mild Hemophilia and receiving appropriate treatment. We will continue to work to advocate for women and cooperate with the Manitoba Bleeding Disorders Program to make sure that women and girls with bleeding disorders get the exceptional care they deserve, and that our website reflects all relevant news related to women and bleeding disorders, as well as the newest research in this area. After this pandemic is over, the time will come to establish a comprehensive care clinic for women in Winnipeg, and I know our committee is excited to begin working to make this dream a reality.

If you have an interesting article idea on a topic relating to women with bleeding disorders, please connect with as and tell us your story. Enjoy this first newsletter for women and girls with bleeding disorders; we are looking forward to receiving your feedback!

Bralette; How I Learned to Love the Bra Again

By Silvana Moran

Puberty hit me like a very slow moving train. I was 13 when I decided I needed a BRA. The symbol of growing up. Unlike starting a period, this was much more exciting and much less scary. My mom took me to the department store where I got my first training bra. It was cotton, with simple lace and an elastic bottom. Perfect. I was GROWN.

It was many years later, (and a few cup sizes too) that I started to notice bruising. At first I didn’t see it, or feel it, just something I saw in the mirror. Bruising under my breasts in the shape of my underwire. And then I saw broken blood vessels on my shoulders, right where my straps sit. Of all the things my bleeding disorder did to me, this one was tough to swallow. Just by simply wearing a bra, it was marking me with proof that I was different.

So in 2016, I stopped wearing bras. On the cusp of being a 30 year old lady, I wanted freedom. And it was glorious my friends. No more stabs and bleeding from rogue underwire, no more bruised shoulders that made me self conscious when I wore a strapless dress. But I was facing an issue. As much as I was enjoying letting the girls breathe, they were wild and untamed. I couldn’t wear a sheer top or certain dresses without some sort of structure and support.

Of course I do wear bras for specific occasions, most days I wear a beautiful little thing called a BRALETTE. Not quite a bra, not quite a sports top. It’s like my cute little training bra grew up and no one told me. There’s no underwire, padding is optional, and the straps are wide and soft. Everything about it is...soft. And there’s so many styles to choose from. It’s the perfect item for bruised people like us. And I will never stop raving about it. I thought my relationship with bras was over, but the bralette has me in love again.

Carrier Testing for Adult Women 

The Women and Bleeding Disorders seminar held in October 2019 raised questions about how women can access the adult side of the Manitoba Bleeding Disorders Program. Here is some information on the process to access carrier testing through the Manitoba Bleeding Disorders Program.

Adult women with family members with hemophilia, may want to know if they are carriers of hemophilia. To begin the process, you need to ask your Primary Care Provider for a referral to the Manitoba Bleeding Disorders Program. A formal referral to the Program gives them a medical professional to communicate with, and also creates a formal chart in CancerCare Manitoba for your records. It is important to tell your Primary Care Provider to address the referral to the Bleeding Disorders Program and send it to the Referrals Office at CancerCare Manitoba. Please tell the medical professional the referral needs to say ‘family history of hemophilia, and potential carrier’. If you have had any prior bleeding issues, this is the time to highlight those. Once the Manitoba Bleeding Disorders Program has received the referral, they will contact you to arrange a clinic appointment. 

Refresh your PPE! Free Kit from CHS-MC

Spring is in the air and we are almost over the finish line with COVID-19. Are you tired? Is your PPE? The Chapter is offering to send a kit to your home to refresh your reusable mask supply and restock your hand sanitizer and antibacterial soap! We will deliver your orders in a safe socially distant manner within the city of Winnipeg and we will ship kits outside of Winnipeg.

CHS-MC is able to offer these items with special thanks to The City of Winnipeg Wellness Grant and to the members who have supported the Spring Fling raffle and 50/50 draw.

Each Chapter family that places an order will receive a  500ml bottle of Capital K Distillery hand sanitizer and a  332 ml bottle of Softsoap antibacterial soap.

Each Chapter family is welcome to select one mask per family member. If you don’t see a pattern you like in your size, ask us on your order form. We might be able to get it for you! Before you head to the order form, make notes of the sizes and patterns you will want to order from the Photos of Masks. Then go ahead and place your ORDER! 

Let's Talk Period  

Do you have women and girls in your family who need to know? Tell them about the Self-BAT. 

The Self-BAT (self-administered bleeding assessment tool) is a scientifically validated scoring tool developed by Dr. Paula James targeted at individuals who are concerned about bleeding. Taking this test will help you better understand whether current, or previous, bleeding episodes are normal or abnormal. Self-BAT

VWD Guidelines 

The American Society of Hematology ISTH NHF WFH Guidelines on the Diagnosis and Management of VWD are now available! Guidance on prophylaxis, diagnostic cutoffs, genetic testing, surgery, heavy menstrual and postpartum bleeding and much more! For the guidelines and related resources visit

Are There Access to Care Issues for Women with Bleeding Disorders?
CHS Rendez-Vous 2019
Copyright © 2021 Canadian Hemophilia Society, Manitoba Chapter, All rights reserved.

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