BLOODY HEROES

In Episode no. 10 host Uroš Brezavšček talks about his experience with chronic pain and what helped him to live the last 9 years mostly pain-free life and even run which was before impossible. He shares what he found about the role of food and other factors like hydration, toxins, sleep, love, etc in alleviating pain.

In Episode no. 9 host Uroš Brezavšček talks about World Haemophilia Day and the opportunity that comes with this day to raise awareness about bleeding disorders and related topics. In his opinion, the area where a lot can be done to increase the quality of life of patients around the world is the psycho-social aspect of health/life and he wants to raise awareness about it.

In the 8th episode of the podcast, my guest is again Dr Athanas Banchev who is a medical doctor specialized in pediatric haematology that is really passionate about bleeding disorders.

This time we dived deep into the fundamentals of bleeding disorders and we tried to answer most of the question that a patient with a bleeding disorder or his/her family could have about the factors and coagulation process. We covered Haemophilia A, B and von Willebrand disease. Dr Banchev described what are factors, how the body produces them, what is the difference between them and how they play a crucial role in the clotting cascade. He in details described the primary and secondary haemostasis and what is the reason that prevents the body of a patient with a bleeding disorder to stop the bleeding. We talked also about ice and why it is good to apply when you have a bleed and for how long you should have it. Then the conversation steered towards the life-cycle of factors, what is the half-life of factors and why they get removed from the bloodstream after certain time. We also briefly covered the evolution of the treatment. Dr. Athanas also described how modern recombinant factor concentrates with extended half-life work, and why he doesn’t believe we are going to see treatment in the form of a pill. We concluded this conversation talking about the woman with Haemophilia A and Haemophilia B.

This time, I had a privilege to have a conversation with a caregiver and not a patient. My guest Dr Atanas Banchev is a medical doctor specialized in pediatric haematology that is really passionate about bleeding disorders. He did his PhD thesis in the largest haemophilia centre in Europe in Bonn, Germany and now works in the largest haemophilia centre in Bulgaria.

In the episode, Dr Banchev shared his motivation behind becoming a haematologist and how he ended up in Boon. We discussed the research he has done for his PhD and talked about why he refused the invitation to continue his career in Germany. He also shared the challenges he faces treating patients back home in Bulgaria and how he collaborates with his colleagues to achieve a batter standard of haemophilia care. The conversation also touched inhibitors. He beautifully described what inhibitors are, how we treat patients with them and how does ITI therapy (Immuno tolerance induction therapy) works. We briefly spoke also about gene mutations and how are genes causing haemophilia. Dr Banchev also told me about an article that he wrote for the Liberate life project in which he amongst other things explains the current treatments and what is the future of treating the haemophilia A. He also mentioned new technologies that he is passionate about and that will revolutionize haemophilia care. One of them is a handheld ultrasound device. To conclude this interesting interview he shared with me how he sees the evolution of haemophilia care in the next five years and his conviction that the best in haemophilia care is yet to be seen.

The guest of this episode is Clive Smith, a patient with severe Haemophilia A that despite the pain in his joints competes at the most extreme triathlons on the planet - IRONMAN. But he is much more than just a sportsman, he is a leader in the haemophilia community. Clive is the president of UK haemophilia society, EHC youth ambassador and newly elected World federation of Haemophilia board member.

In this podcast, Clive shares how was growing up in a household where all the kids were patients with haemophilia. Then the conversation switches to sports. He talks about what motivated him to start running, how bleeds affected his recreation and what he has done to be able to continue running. He also tells us how he started to compete at triathlons and how he treats himself before the races. We concluded our conversation talking about leadership, what are traits of leaders and what is in his opinion the reason behind his quick progress from national level leader to now becoming a WFH board member.

In Episode no. 5 host Uroš Brezavšček addresses the topic of mindsets and why the mindset that allows growth is crucial if we want to thrive and live an extraordinary life. Mindset is responsible for how we see and experience things that happen in our reality and is the first thing we need to address If we want to transform our lives. Uroš also shares his own mindset and how it helps him face the challenges of his life - losing a job, living with chronic pain, having a bleeding disorder,...

Mark Ward is patient with severe haemophilia A who found out at the age 14 that he has been infected with HIV. As he grew up he realized his feelings had nothing to do with being HIV positive but were about he being gay which brought even more stigma and discrimination into his life. But he never gave up, on the contrary, he followed and fulfilled his dreams. Now he is helping others by advocating for compensation for patients that got infected with HIV and Hepatitis and is also offering support and information to others with bleeding disorders who also identify as LGBT - He is the LGBT Ambassador for Haemophilia. In this heart touching interview Mark shares the struggles and horrors of growing up with haemophilia in the early ’70s where some medical procedures he had been subjected to would be by today's standard classified as torture. Infection with HIV and his sexual orientation, later on, made his life a living hell. But he never gave up. Marks' life story is about pain, discrimination, death but also about love and joyful life. If you want to get inspired, this is for sure a story worth listening to. Where to find Mark? WEBSITE: www.haemosexual.com EMAIL: mark@haemosexual.com Public inquiry: www.infectedbloodinquiry.org.uk