The Susan Skinner Memorial Fund (SSMF) endowment was established in 2007 by the World Federation of Hemophilia (WFH) USA to support the training, education, and leadership development of young women with bleeding disorders. Danielle Schwager was the 2010 SSMF Scholarship recipient. We asked her a few questions about how the scholarship has made a difference in her life.
Why did you apply to the Susan Skinner Memorial Fund (SSMF)?
I applied to the SSMF because I thought it would be a great opportunity to travel the world and meet others with bleeding disorders. I was really hoping to meet another woman with hemophilia B, as I hadn’t yet met another woman with my specific bleeding disorder since my diagnosis 12 years prior.
What are the challenges facing women in bleeding disorders research today?
While we have made great strides, there are still medical professionals who believe that women cannot have a bleeding disorder, and will say that they are a “symptomatic carrier” instead of diagnosing them with a bleeding disorder. It is difficult for some women to have people believe their symptoms.
Why do you feel it’s important that this scholarship be awarded to a woman?
Hemophilia still has the stigma of being a male-only condition, so it is important that women are educated about hemophilia in women and have access to support services. In many cases, women are only seen as caregivers. The SSMF provides women with the opportunity to educate themselves, understand their treatment options, and connect with other women who understand their condition and experiences.
How did receiving the scholarship impact your involvement in the bleeding disorders community?
After attending the WFH 2010 World Congress, I became more involved on a national level, and I assisted in planning two Annual Meetings for the National Hemophilia Foundation. I was able get involved thanks to the connections I made during the WFH 2010 World Congress.
What was the most important thing you learned from your participation in the WFH World Congress?
Through my participation in the WFH World Congress, I learned that I am not the only woman advocating for bleeding disorder recognition for women, and that this is an issue that does not just exist in my country. The lack of diagnosis and recognition of women with a bleeding disorder is a worldwide issue.
If you had a single sentence of advice to give the next recipient of the SSMF, what would you say?
Share your story and listen to the stories of others as much as you can. We may all be from different countries, but we have much more in common than we think!
Are you still involved in a bleeding disorder organization and, if so, what is your role?
I am a part of our local chapter’s Women’s Task Force, and currently serving my first term as a member of our Board of Directors. I also attend national meetings and conferences when possible.
To find out more about the Susan Skinner Memorial Fund Scholarship (SSMF), Danielle Schwager, and the many other SSMF scholarship recipients, please click here.