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. Alexandra Gamber was the 2011 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 SSMF?
I applied on the encouragement of a few of my friends in the bleeding disorders community. At the time, I was a member of the National Youth Leadership Institute at the National Hemophilia Foundation (NHF) in the U.S.A, was a junior in college, and had never traveled internationally by myself. The idea of potentially receiving the SSMF in 2011 and then being able to go to Paris to attend the WFH 2012 World Congress, WFH Global NMO Training, and the WFH General Assembly was very exciting. I thought the odds of being chosen were slim, but I couldn’t pass up the chance.
What are the challenges facing women in bleeding disorders research today?
I think the challenges are a multifactorial issue, focused mainly on research funding and awareness in the medical community as well as in the patient population. I think this can be partially mitigated by increasing diagnoses. The average time between onset of symptoms and diagnosis for a woman with a bleeding disorder is 16 years. If we shorten that time by improving the knowledge of signs and symptoms on the part of both patients and providers, we will have the twofold benefit of increased awareness in the medical community (which I would like to think could promote further research), and increased awareness in the patient community—which can undoubtedly have a great influence. The bleeding disorders community is an organized and motivated one, and is not afraid to stand up for what it needs. We certainly need to investigate mild bleeding disorders more thoroughly, so that we can provide women and girls with diagnoses long before they suffer undue hardship. We also need to continue working on factor products for severe bleeding disorders as well—the fact that it is 2017 and we still can’t offer type III von Willebrand disease (VWD) patients a recombinant factor product is remarkable.
Why do you feel it’s important that this scholarship be awarded to a woman?
Men and women with bleeding disorders certainly have something significant in common—but their experiences are totally different. The bleeding disorders community has a (relatively) long history of focusing on the experience of people with hemophilia, and people with hemophilia are usually male. We should keep in mind that this is because men with hemophilia have a long history of suffering from an extraordinarily severe, life-threatening disease, one that imposes different needs and restrictions on people than non-hemophilia bleeding disorders do. This does not diminish or exclude the fact that women also have hemophilia, that many women who carry hemophilia mutations have mild or moderate hemophilia, that many women with non-hemophilia bleeding disorders are also managing life-threatening illness, and that women with non-life threatening, non-hemophilia bleeding disorders have their own unique struggles.
It is not fair nor it is enough to simply allow women with bleeding disorders a seat at the “hemophilia table” that is already well attended by men and people with severe hemophilia—we must specifically tailor programming and resources to women. No matter what her diagnosis, a woman will tell a significantly different story as a patient with a bleeding disorder than a man, and I think it is one that we are just beginning to hear. By providing opportunities like the SSMF scholarship to women, we are opening ourselves up to a side of the bleeding disorders community that has been present but silent for a very long time.
How did receiving the scholarship impact your involvement in the bleeding disorders community?
Although I was already involved in my state hemophilia chapter in the U.S.A and with the NHF, the SSMF scholarship allowed me to connect with members of the community from across the globe. Additionally, the experience of traveling abroad contributed greatly to my personal development in many of the same ways my experience with the National Youth Leadership Institute (NYLI) and working at my state chapter’s summer camp had done. After attending a WFH World Congress, WFH Global NMO Training, and WFH General Assembly, I cannot imagine not continuing my involvement in the bleeding disorders community. I am deeply grateful for the opportunity the SSMF scholarship afforded me, and feel that my experiences with the WFH have provided me with a unique perspective I will take with me into my career as a physician—in particular, a commitment to closing the gap in treatment and access to care for all people.
What was the most important thing you learned from your participation in the WFH World Congress?
Prior to attending the WFH 2012 World Congress, I only had a general understanding of the gap in hemophilia treatment around the world. Attending the Congress and meeting bleeding disorders patients from across the world gave me a first-hand glimpse into the real faces and stories of the people who are in the gap itself. We so often make assumptions or fail to see the entire picture when we are told about a problem from which someone else suffers. Traveling, listening to people, and understanding their stories serves to continually widen the self-imposed boundary between our experiences and those of others. It is a humbling experience to work at summer camp and learn what a person with joint bleeds endures… it’s quite another to advocate in your state’s capital and hear stories of the profound impact of inadequate access to care on people, and quite another altogether to meet someone with the same bleeding disorder from the other side of the planet, whose entire country must ration access to factor products. The SSMF furthers the mission of the WFH to close the gap by providing life changing opportunities for young women in the bleeding disorders community to not only expand their awareness, but to do the same for others by telling their stories. My experience through the SSMF scholarship has provided me with a newfound appreciation for this fact.
If you had a single sentence of advice to give the next recipient of the SSMF, what would you say?
If you do nothing else, simply ask people to tell you their story, and really listen to what they tell you: we can learn a lot just by listening.
Are you still involved in a bleeding disorder organization and if so, what is your role?
I am currently in medical school, and as such have had to change the way I contribute to the efforts of my state chapter. I am less able to attend and volunteer at fundraisers and events, but am hoping to facilitate a relationship between my state chapter and my medical school. I am currently working on coordinating with my medical school’s administration to consider adding the Hemophilia Foundation of Michigan to the list of organizations that can be eligible for my medical school’s curricular volunteer requirement. I am also working on a partnership between my medical school and the Hemophilia Foundation of Michigan (HFM) to send third year medical students to camp to fulfill their pediatrics rotation requirements. Aside from this, I look forward to becoming a physician and continuing to contribute to the bleeding disorders community as an advocate, a patient, a community member, and a provider.
To find out more about the Susan Skinner Memorial Fund Scholarship (SSMF), Alexandra Gamber, and the many other SSMF scholarship recipients, please click here.