by Janet Brewer, M.Ed
Published: Lifelines for Health Spring 2018
For the second time, CHES has presented a poster abstract at WFH on the LadyBugs Program. LadyBugs was founded in 1998 by Barb Forss, an amazing woman who received her diagnosis of severe FVII deficiency at the age of 47. She had been told her entire life that “only males have hemophilia”. Armed with her new knowledge, Barb became an outspoken advocate for women with all bleeding disorders. Although CHES has assisted Barb and LadyBugs for over a decade; we officially assumed it as a program in 2016. Similar to all of our programs, the LadyBugs Program satisfaction rating was 97% in 2017.
In 2016, CHES offered the LadyBugs program in three (3) regions within the United States, partnering with local chapters in Oregon, Texas and New York. These three programs were small, but successful, with an overwhelming request for MORE. The first and only National LadyBugs Women’s Summit became a reality on November 4-6, 2018 in Newport News,VA. Funding from Aptevo, Bioverativ, CSL Behring, Grifols, HEMABiologics, Kedrion, Novo Nordisk, Octapharma, Shire, and Soleo made this inaugural event possible. Separate tracks for vonWillebrands, FVIII/FIX and Rare Bleeding Disorders to include FV, FVII, GT, FXI and platelet storage pool were presented by Virginia Kraus, Dr. Joanna Davis (who presented Dr. Robert Sidonio’s slides), and Dr. Diane Nugent. Sessions on mindfulness, advocacy, self-infusion and self-care were offered. Saturday evening, we gathered for a paint night celebration.
Science is finally confirming what we as women have known for years, we bleed. The “family
business” of prolonged periods and anemia are NOT normal! On November 3, 2016, MASAC released a Recommendation Regarding Girls and Women with Inherited Bleeding Disorders #245 indicating that “Inherited bleeding disorders are under-recognized as causes of bleeding in girls and women. However, recent data have documented that 50% of girls and women who are carriers for hemophilia A or B have factor VIII or IX levels below 50%, putting them in the category of mild hemophilia and causing them to have an increased risk of bleeding, especially during menstruation and at the time of an accident, surgery, or delivery.” https://www.hemophilia.org/Researchers- Healthcare-Providers/Medical-and-Scientific-Advisory- Council-MASAC/MASAC-Recommendations/M
CHES is committed to increasing awareness, as well as advocating for more research and education for women with any bleeding disorder through the LadyBugs Program.
