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. Nejiba Chayah 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?
The president of my national member association (NMO) (Tunisian Hemophilia Association), encouraged me to apply, as he felt that I had a good shot at getting a scholarship, and, if I got one, could bring new knowledge back to the association. Also, I’ve always wanted to build relationships with people from all over the world. In my first days in my NMO I heard stories of patients around the world, and these stories really touched me. It made me want to open myself more and more to the world of bleeding disorders. I wanted to be aware of patient stories—and all the developments related to the world of bleeding disorders.
What are the challenges facing women in bleeding disorders research today?
Our main challenges are a lack of diagnosis, and a lack of psychological support. For example, the diagnosis of VWD in a woman can be very challenging to process emotionally, simply because VWD is not as well understood as hemophilia, so there aren’t as many support resources available and what is available is more geared towards men.
Why do you feel it’s important that this scholarship be awarded to a woman?
Giving this kind of opportunity to a woman helps to balance out the proportion of resources given to us versus given to men. It also gives a boost of confidence to women with bleeding disorders, and encourages us to be more involved in the community and with our NMOs.
How do you think attending the 2018 WFH World Congress will impact your involvement with the bleeding disorders community?
With all my heart I say that it was an amazing experience. I learned a lot, made new friends, and I have so many memories that will stay with me forever. I smiled and even had tears in my eyes when I heard people’s stories. And when people shared their stories, I took their lessons to heart. Everything I experienced will give me strength to continue working in our community. Now that I have made more contacts with colleagues, we can share learnings.
All of this will give me a broader idea about life with a bleeding disorder. It has also given me a greater understanding of what other countries are doing to help the cause. Now it’s up to me to give again and again to the Tunisian association and help the bleeding disorders community in my country.
Can you share with our readers your most memorable moment (or two) from the WFH 2018 World Congress?
I really had some wonderful meetings with young people of my age. In one particular case, I was listening to the story of a young person who had had gene therapy. I listened to his story attentively and I was moved by his desire to help others. I decided then and there that I absolutely wanted to do the same thing. I thank everyone at the WFH very much for providing me with such a special Congress experience!
Now that you are back from Glasgow, what project will you be tackling next?
I will spend more time working for—and supporting in any way I can—the Tunisian Hemophilia Association. I want to work with the Tunisian government to better support people with bleeding disorders in my country. I also want to increase the profile of women with VWD and other bleeding disorders in Tunisia, as it’s still seen as a male-focused condition. I would also love to
bring together young people to facilitate discussions between the people who are part of our bleeding disorders community.
To find out more about the Susan Skinner Memorial Fund Scholarship (SSMF), Nejiba Chayah, and the many other SSMF scholarship recipients, please click here.