“I have learned so much from living with hemophilia”: Ekawat Suwantaroj shares his journey
Ekawat Suwantaroj from Thailand was diagnosed with severe hemophilia at just four months old. The condition greatly affected his childhood, but he has since found meaning and purpose from his diagnosis.
Today, Ekawat is a patient advocate and works as a graphic designer. He designed the World Thrombosis Day (WTD) campaign logo, an infinity symbol that is recognized by thousands across the globe. In this Q&A, Ekawat shares his hemophilia journey and discusses his vision for the future.
How you were initially diagnosed with hemophilia and how did the diagnosis affect your early years?
Ekawat: It was a very difficult situation for my parents. Luckily, we had access to the diagnosis and treatment for my condition because we lived in the capital city. I think the early stage of knowing about hemophilia was fear and hopeless.
What kind of treatment did you receive and did you experience any chronic symptoms?
Ekawat: Back in 1976 in Bangkok, there was not much information about hemophilia. The only treatment was cryopicipitate. My parents raised me without knowing any other families affected by hemophilia. My father put me in the school that was near his workplace. When I started elementary school, I had to go to the hospital 2-3 times per month. I developed two target jointed in both ankles. At school, teachers treated me different from other kids. I got bullied and teased. My parents protected me to ensure I would not have significant bleeding. I was not allowed to play at the playground and I did not know other neighborhood kids.
How has living with hemophilia affected your life today?
Ekawat: I am so happy with my life right now. I have learned so much from living with hemophilia. It taught me to have a conciousness and awareness in life. I still have the target joints, but I accepted my limitations and I am happy with what I am able to do. I find the value of my life, taking care of parents and my family, plus I can use my personal experiences to support others with hemophilia or rare diseases.
Do you think there are any misconceptions about severe hemophilia?
Ekawat: I used to rely on only the treatment product. I thought I could not do the exercise, but that was very wrong. Exercise is so important and it helps to reduce my risk for spontaneous bleeding. We, people who are living with hemophilia, just need to find our own way to do things.
You are known for your graphic design work and now own a graphic design company. Did hemophilia have any effect on your creative interest and expertise?
Ekawat: Because of my hemophilia, I decided to start my own business. The good thing is I can prioritize my health.
How did you come up with the infinity symbol logo design for World Thrombosis Day?
Ekawat: The main idea of the World Thrombosis Day logo is the flow of sustainability. I picked the infinity symbol and matched it with the red and blue brand colors. At the intersection, there is a space to fill with the treatment. It is an honor that my work can be used. Particularly, the WTD logo is for the global community and it is relates to hemophilia as well.
What are your hopes for the future of hemophilia treatment?
Ekawat: I would like to see low and middle income countries have access to safe treatment. Globally, innovations have gone far, but there is a gap between developed countries and low/middle income countries. If we are not going to help them, this gap will expand. One person can’t help, but together we can.