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.
Frankly.net editorial board member Tobias Becker sat down with a former SURO...
Frankly.net editorial board member Tobias Becker sat down with a former SURO paricipant named Michael to discuss his key takeaways from the World Federation of Hemophilia World Congress.
1. How did you happen to participate in the World Congress?
Having been nominated and selected by the Ghana Hemophilia Society (GHS) and World Federation of Hemophilia (WFH) respectively, I represented GHS as a delegate and a youth fellow which allowed me to participate in the workshop trainings with other youth around the world.
2. What were some of your highlights from attending the World Congress?
The congress provided information on diverse topics such as matters relating to clinical issues, fundraising, and other plenary sessions. These topics were all geared towards the goal of making treatment available for all. One other major highlight was based on Gene Therapy and its current improvement in both medicine and technology.
3. How did your participation change your views and your involvement in the community?
Through my participation in the National Member Organization (NMO) training and Congress, I have come to realize that everyone in the hemophilia community has a role to play irrespective how small or big it is. And also, we can overcome our limitations through effective team work and proper communication.
4. Why would you recommend your fellow blood brothers in participating in a World Congress?
Looking at the knowledge, skills and information I gained during the World Congress, I would recommend other legible fellows to participate in the Congress. Furthermore, I had the opportunity to come out of my own world to a wider world of new and interesting people where I made good connections, shared my experiences and learnt from the experiences of others. This is also one reason I would acclaim others to participate in the World Congress.
5. Is there anything else you would like to share with other people with hemophilia around the globe?
Challenges are part of life but once they are well handled, positive changes can be made and this can effectively be achieved through team work and learning from others.
I have always asked myself “Why is it ME that has to live with Hemophilia?” and am certain that all of my blood brothers...
I have always asked myself “Why is it ME that has to live with Hemophilia?” and am certain that all of my blood brothers and sisters have experienced the same thought. During rough times, like tooth extraction operations, radioactive synovectomies or prolonged joint bleeds, I would ask this question with anger and frustration. One day, I re-evaluated my perspective and asked myself another question: is hemophilia a blessing in disguise?
Hemophilia as a Motivator
Utilizing my negative thoughts as fuel to do more was the key. Everyone is born to achieve something; you start by achieving your own goals, and then helping others achieve theirs. Hemophilia was the main reason I became a pharmacist, worked to learn another language, traveled to different places, met amazing people and shared a lot of happy moments with the people I love the most.
It is all about taking time to consider what you have and reallocate your resources and potential to your desires. Hemophilia can be a burden if you allow it to, but it also can be a great blessing as well.
It is your choice: what is your decision?