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. Rana Mahmoud is a 2018 SSMF Scholarship recipient. We asked her a few questions about what it means to receive a SSMF Scholarship.
Why did you apply to the SSMF?
As a patient and a nurse in the Lebanese Association for Hemophilia, and as a youth group member, I wanted to gain experience and get knowledge about bleeding disorders from the WFH World Congress and from the WFH National Member Organization (NMO) training to bring back with me to Lebanon. The SSMF seemed like a great way to make that goal happen.
What are the challenges facing women in bleeding disorders research today?
A major challenge women have is the lack of proper diagnosis of our condition. This is due to the myth that bleeding disorders are a male disease. I think people in our community need to know that women with symptomatic or asymptomatic bleeding disorders are affected in a way that is very similar to men. Another challenge women have is to overcome the lack of access to psychosocial and physical support that we need to better manage our condition.
Why do you feel it’s important that this scholarship be awarded to a woman?
Awarding this scholarship to a woman highlights the fact that women are affected by bleeding disorders the same way men are. In addition to this, I feel that the scholarship also helps women with their self-confidence in a world where they might feel resistance to being properly diagnosed, and where even a proper diagnosis might not be accepted by some physicians in the local medical community.
How do you think attending the 2018 WFH World Congress will impact your involvement with the bleeding disorders community?
Attending the WFH 2018 World Congress gave me the chance to see the world of bleeding disorders in a better, more expansive way. It was a week to remember. I learned so much, shared so much, had wonderful experiences and a lot of fun with amazing people from all over the world. It inspired me. And now, it is time to begin working to help the bleeding disorders community in my country and around the world!
Can you share with our readers your most memorable moment (or two) from the WFH 2018 World Congress?
All my moments from Congress were memorable. But if I had to choose one, it would be when Frank Schnabel (son of the founder of the WFH) told us his story. I was listening to him with all my senses—with all my heart—and it was very special.
Now that you are back from Glasgow, what project will you be tackling next?
As a “patient nurse”, I want to sprinkle hope and pride over all the patients in the Lebanese Association for Hemophilia to keep youth engaged with our group so their young voices can echo throughout the community. I hope this can push the Lebanese government to provide sufficient factor replacement to the community for prophylaxis treatment so that the quality of life of people with a bleeding disorder in my country can be improved.
To find out more about the Susan Skinner Memorial Fund Scholarship (SSMF), Rana Mahmoud, and the many other SSMF scholarship recipients, please click here.