SHARING PERSONAL EXPERIENCES WITH ADVOCACY AND HEMOPHILIA

1) When were you diagnosed with hemophilia? What was that experience like?

Alex: I was diagnosed when I was 8 months old.
Anthony: I was diagnosed at birth. I had several challenges in childhood as I was active in contact sports, which I eventually had to stop because of joint injuries I had.
Lukas: I can’t really remember as I was about one when my mother saw I had several bruises. She then took me to the hospital and doctors later confirmed that I have hemophilia.

2) In what ways has hemophilia affected your life since you were diagnosed?

Alex: It has made it painful, hopeless and lonely. I couldn’t play with other children when I was young, or go to school or play any sports
Anthony: At some points, it has caused me to sink into depression and even consider suicide because of the pain and the discrimination from others. My friends and family are very supportive, but at the beginning it was very difficult for me.
Lukas: It really didn’t affect me as it is something that I was born with and I did not know anything else; I learned what it was and how to live with it. Maybe at the time if I wanted to play football it was a challenge for me.

3) What are some of the biggest challenges you face due to living with hemophilia?

Alex: The biggest challenge has been accepting myself.
Anthony: Self-acceptance; dating and relationships; finding accepting employers that understand the condition and being limited physically to participate in active sports.
Lukas: Wanting to do certain sports and not being allowed to.

4) Do you have any mentors you look up to?

Alex: Yes, Alex Dowsett inspires me as he is a professional bike racer even though he has hemophilia.
Anthony: Yes. I have a lawyer as my professional mentor, but I am also my own biggest motivator. I’ve come a long way and have already achieved a lot, but there is more to come!
Lukas: Tobi from Germany, who is now part of the frankly.net editorial board, was a leader who inspired me to get involved. I also look up to my physician, Dr. Königs, due to his positive mindset, personality and willingness to help people.

5) What do you do to advocate for the hemophilia community?

Alex: It’s important to create awareness around hemophilia, which is why I volunteer in the community and advocate at my school to teach people about hemophilia.
Anthony: I volunteer in the hemophilia chapter in Kenya both as a board member and as a patient representative. I help create awareness through the media, lectures and newspaper articles, as well as by lobbying the government for better treatment standards.
Lukas: Our current challenge is people not wanting to attend meetings, which is something I advocate for, given that patient organizations are extremely important for maintaining high treatment standards in countries

6) If you could give advice to a young person who also has hemophilia, what would you say?

Alex: Self-acceptance is important, and I recommend trying to not hate the fact you have hemophilia. Always remember that you are not a patient, you just have hemophilia.
Anthony: Self-acceptance is key in realizing one’s potential as a person with hemophilia.
Lukas: Don’t care too much about your condition – always remember there is a solution to most challenges you may face.