There are still too many women with bleeding disorders who, despite symptoms, are unaware of their disease. That circumstance will be a major topic Oct. 19-21 at The Fourth Annual Female Factor Retreat, hosted by the Hemophilia Foundation of Northern California (HFNC).
Other topics at the educational retreat, to be held in Monterey, California, will include diagnosis, disease management, overcoming barriers and trauma, and menstrual and sexual health, according to a press release.
“Many women continue to go undiagnosed, so we appreciate the opportunity to build awareness about the impact bleeding disorders have on women,” said Flemming Nielsen, president of Octapharma USA and sponsor of the retreat.
“Octapharma is committed to providing life-saving therapies for people with bleeding disorders as well as supporting innovative learning experiences that maximize their quality of life,” he said.
Speakers will include Amber Federizo, a nurse practitioner with the Hemophilia Treatment Center of Nevada, who will address, among other things, the issue of bleeding during intercourse. Mena K. Zaminsky, a marriage and family therapist, will discuss how to manage the trauma that often accompanies bleeding disorders.
In addition, Octapharma USA patient educator Seth Rojhani will talk about surmounting life’s impediments. He should know; he’s a paraplegic with Hemophilia A who won a Bronze Medal while a member of Team USA wheelchair basketball team at last year’s Maccabiah Games in Israel.
“It is about overcoming challenges in life and being determined to never stop doing what you love despite people telling you no,” Rojhani said. “Being able to think positive is a step in overcoming those challenges and discovering ways to work through obstacles and challenges that may arise.”
Under the auspices of the HFNC, the Female Factor is a contingent of women that provides education and other support to those with bleeding disorders.
The retreat will take place at the Monterey Tides Hotel. It’s limited to women 18 and older, and includes meals. Go here to register.
Meanwhile, Octapharma USA also presented the first bleeding disorders community screening of “Bombardier Blood” during the National Hemophilia Foundation’s (NHF) 70th Annual Meeting on Oct. 13 in Orlando, Florida.
The documentary tells the story of Chris Bombardier, who recently became what’s believed to be the first person with severe hemophilia to scale Mount Everest. Octapharma sponsored both the climb and the film, expected to be released to the general public next year.
“Chris’ achievements have already inspired thousands of people in the bleeding disorders community to dream about their own Everest,” Octapharma’s Nielsen said in a press release.
Bombardier said he hopes the film raises awareness of hemophilia, especially in developing countries.
“As the film clearly shows, hemophilia looks dramatically different in places like Nepal, where people with severe hemophilia are lucky to live past 10 years old,” he said.
Octapharma is one of the world’s largest manufacturers of human protein products. In May, the company sponsored what was called the only national camp exchange program for bleeding disorders. Two months later, the company sponsored an educational national conference for Type 3 Von Willebrand disease patients.