NOVEMBER 30, 2015 ISSUE 1

Letter From the CEO: Welcome to the first edition of The Women’s Bleeding Disorder Coalition’s E-News ‘Breaking Barriers’. Breaking Barriers will be sent out twice per quarter with behind-the-scenes news from the WBDC office and programming. We will also be spotlighting our Board Members and Ambassadors in each edition, as well as industry news, clinical trials, new products, etc. You can opt-in to be on our mailing list on our website, www.womenbleed.org. For sponsorship and advertising information, contact Samantha Costa, CFO at samantha@womenbleed.org. For programming information, contact tammy@womenbleed.org.

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NEW PRODUCTS & CLINICAL TRIALS

WOMEN ARE CHANGING THE

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Sponsored By

Paragon Healthcare understands the challenges of women with bleeding Disorders. We are honored to be on the forefront of this movement!

NOVEMBER 30, 2015 ISSUE 1

Frances Fights for Her Health

After finding out my firstborn had severe hemophilia b at 6 months old, I was in shock. I was confused, scared, and I had so many questions. I even remember asking "why me?" After so many articles and online literature, I found the power of Facebook support groups.

It was the greatest support I had and where I started to realize that girls have it too.

I had flashbacks of all the issues I've had from 18 day menstrual cycles, to postpartum bleeding of 7 months, frequent ankle and knee pain from "sprains", nosebleeds, and daily bruising. My first step was to get my levels tested. I was refused 3 times by my OBGYN. He said "you already know the answer you're a carrier for sure, so there's no point in testing."

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NOVEMBER 30, 2015 ISSUE 1

My son's hematologist was appalled, I remember him writing an order for me to get tested. I finally checked at another clinic with a family doctor and was immediately referred to texas oncology. "Your levels are 24%, so you have just mild hemophilia and should rarely if ever have a bleed". That statement itself rubbed me so wrong! A few days later I had a knee bleed, the pain was excruciating. I went back to clinic and was told I would get an X-ray. She told me there was no blood present in the film, so I was not having a bleed. Even when my knee was doubled in size and red and purple. "You don't need factor" she said, "unless you give birth or have dental work" I had no choice but to suck it up. I mean she was the expert, she knew better, right? Wrong.

Three weeks later I had a GI bleed and was hospitalized for 3 days. I was finally given factor. My knee continued to bleed on and off for about 3 months. There were days I couldn't even walk and I returned to clinic constantly. I was refused factor each time during these bleeds, because it would "cause a stroke" and "I wasn't having a true bleed."

I have been having so many joint issues and Later realized I was due to poor care. he last straw was when I, again, had a bleed in my knee and had to go to the hospital to receive factor.

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“I now have an amazing family of blood brothers and sisters, who understand me and support me

100%.”

NOVEMBER 30, 2015 ISSUE 1

A good friend and fellow blood sister, Tammy Davenport, visited me while at the hospital. She helped open my eyes and stand up for myself. Between her and my great friend, Brenna Greenberg, together they introduced me to a great hemophilia team in San Antonio, which is a little over and hour away. Thanks to Dr. Blair and her nurse Dezarae, I feel like I matter and self infuse regularly at home with my own factor!

I encourage women to keep pushing for second and third opinions, if you feel something is wrong. We deserve to be have individualized treatment, not by levels or gender. Hemophilia is so unique to every individual. Find support. Ask questions. Be firm.

I now have an amazing family of blood brothers and sisters, who understand me and support me 100%. Special shoutout to our Women Bleeders group! ~ Frances, Hemophilia B, Texas

Hello, My name is Kari Peepe and in 2011 my daughter and I were diagnosed with a platelet storage pool disorder. After several years of researching and going online to find men sharing their stories about hemophilia, but never women talking about platelet disorders. . . I decided to start my own personal blog, A touch of Scarlett (http://atouchofscarlett.blogspot.com) This has become a place where I share stories about our life with a rare bleeding disorder, spread awareness and hopefully empower others to help me in the fight for a better treatment plan.

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Platelet Storage Pool Disorder

NOVEMBER 30, 2015 ISSUE 1

Through sharing our story, I've become very active in the bleeding disorder community, and plan on being here for the long haul. I'm constantly advocating for more research, a safer treatment plan and try to be a voice in the community that lends a positive environment where people can share their stories without being judged or discouraged. I've got a plethora of ideas on ways to improve the bleeding disorder community and can't wait to put them into action.

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NOVEMBER 30, 2015 ISSUE 1

BOARD & STAFF

Tammy Davenport, CEO/President pro tem

Samantha Costa, CFO

Randy DeSantis, Vice President

Ashley Gregory, Secretary

Darlene Shelton, Treasurer

Donald J. Smith, Board Member

Kendall Dean, RN , Board Member ~ Please visit our website for detailed bios on each member of our board and staff, as well as our Ambassador network and Medical Advisory Council.

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