WFH NETWORK

Recipient of the 2012 Susan Skinner Memorial Fund Scholarship

By Aleksandra Ilijin, Serbia

As a teenager I rebelled against my status as a carrier and did not want to belong to the bleeding disorders community. I eventually came to terms with my status and sought out as much knowledge and information on the subject as I could find.

I started to meet more people in the same situation I realized that I can also be helpful to others and became more and more involved within the community. My interest has always been in youth and social community involvement. Living in a developing country, where people with a bleeding disorder must still fight for better medical care, the social aspects of living with a bleeding disorder are often on the bottom of the list of priorities. But I’m not losing hope.

My ten days at the Global NMO training, Congress and WFH General Assembly was a life time experience for me. My experience went way beyond my initial expectation to learn and gather information – gaining insights from other women in the bleeding disorders community was truly priceless. I also had a chance to meet so many wonderful people from all over the world, all of them ready and eager to effect change. Just knowing that there are so many people that actually do care is a huge boost to my confidence and gives me strength to proceed with my involvement back home.

My greatest wish is to form a support group for women with bleeding disorders and carriers back home to encourage their involvement with mu local NMO. This fellowship gave me the confidence that I desperately needed to fulfill my vision.

Women in bleeding disorders community often bear the burden of being "guilty" regardless from which corner of the world they are come from. Events like Global NMO training and Congress are opportunities for young women with bleeding disorders and carriers to discover there are networks of support available to them.

Through my participation as a SSMF fellow, I learned a lot about varying of care and treatment in different countries, but the main thing that came out of this is that I managed to evaluate the situation in my country and become aware how and what my local community should do next.


Updated September 2012