“I think that each of us has our own ‘haemophilia’ in life – an obstacle that seems insurmountable. But how we respond to this challenge determines where we ultimately go.”
In the framework of our #ThisWay Campaign, the EHC interviewed Adam Trojańczyk (39) from Poland. Living with severe haemophilia B since birth, Adam has overcome significant physical challenges and hospitalisations through determination, discipline, and a focus on personal development, ultimately becoming a successful CEO and an advocate for others facing similar obstacles.
We hope you find Adam’s story inspirational. If you have any questions or would like to get in touch with Adam, please do not hesitate to drop us an email.
Adam Trojańczyk (39), Poland
“In the picture on the right, you can spot my four greatest passions:
- constant sharing of knowledge (mainly through articles, free books and initiatives),
- pro-bono activities for various communities (i.e., associations, NGOs, students, entrepreneurs, start-ups, people with disabilities, or universities),
- daily TRX exercises,
- and sports shooting.
What you can’t see is an illness that has projected itself into my life and taught me a lot.
I have been living with a severe form of haemophilia B since birth. I got my first hemarthrosis right after I turned one year old. When I was a child, my parents were in a constant battle for my health. Our lives were composed of constant trips to the hospital. There were so many of them that when I think about them now, they all blend into one.
However, one moment was particularly memorable for me. It was the time when, due to a massive hemarthrosis in my knee, I stopped walking. At that time, I lay for several months in a hospital hundreds of kilometres away from where we lived. My father came to see me by train every day after work, only to return late at night, go to bed and get up at 4 a.m. for work again. He impressed me with his attitude and determination, teaching me the value of a love filled with commitment. Because of him, I have become the dedicated father I am today.”
Turning adversity to achievement
“Many years later, when I was already a teenager, the option of home medication became available. As a result, hospital visits and sleepless nights became fewer and fewer, and not having to go to school due to home tutoring minimised the number of bleeds. It was a time when I felt a little lonely. After all, I spent most of my days at home, away from my peers. Despite this, the ‘why did this happen to me’ period was surprisingly short-lived. I realised I had gained time and opportunity to focus on my development and decided to make the most of it.
As a teenager, I developed many interests. I wrote poems at night, which were eventually read on the local radio’s night programmes and later at poetry evenings. During the day, I created computer programmes, starting with my first one at age 11 on a Commodore 64. I also developed a liking for mathematics and physics, spending my time solving equations or writing software to do so.
My passion for computers led me to the Technical University, where I studied at the Faculty of Technical Physics, Computer Science, and Applied Mathematics. Driven by an unrelenting desire for development, I opened my own company soon after, despite being completely broke, and have been involved in the IT industry since 2004.
Following the hemarthrosis that hospitalised me for several months, I experienced significant leg congestion and persistent muscle atrophy. Determined to improve my condition, I embarked on a training journey. Initially, I frequented the gym five times a week for several years. During one session, I discovered bodyweight exercises and TRX, which transformed my approach to exercise.
These exercises effectively strengthened my muscles, and after more than 2,000 workouts over eight years, I eliminated most of the contractures in my joints. After approximately 3,000 sessions, I stopped limping and noticed significant improvements in my functioning. Additionally, these workouts enabled me to achieve a long-held dream: obtaining a shooting patent. Now, I dedicate every possible moment to both physical exercise and spending time at the shooting range.”
Mindset
“Most of my life, due to haemophilia, I felt burdened, frequently absent, and in constant pain. I felt like I had to work twice as hard as others and because of numerous hemarthroses. The disease caused me to extend my studies, miss many opportunities and social events. However, my experience of illness and suffering became the catalyst for change, fostering greater discipline, conscientiousness, and order in my life. These values now guide me through all aspects of life, enabling me to persevere despite setbacks. This determination ensures I never give up.
Currently, I serve as CEO of a software house. In 2019, I was elected as a member of the main board of the Polish Association of Haemophilia Patients and in 2023 as the president of the local chapter in Lodz.
I learned how to run a business the same way I learned how to self-inject. I started from scratch and learned from my mistakes. My humanist soul that I produced in my youth and my big desire to help others, share knowledge and change the world for the better led me to become a mentor and expert in multiple acceleration and mentoring programs, universities or even cities. I married a wonderful woman, and we have beautiful kids.
I think that each of us has our own ‘haemophilia’ in life – an obstacle that seems insurmountable. But how we respond to this challenge determines where we ultimately go.
We must remember that in addition to the difficulties, each of us also has the opportunity to overcome our barriers, develop ourselves, and inspire others to take action. The latter is significant to emphasise. For years, I was afraid to talk about my illness, and in the business sphere, I never let it overshadow in any way how I work, what I do and what I want to achieve. Even if I had to work two, three or thirty times harder, no one knew about my illness.
But years passed, and with my wife’s and other patients’ encouragement, I began to break down my barriers. Although it still causes me great difficulty, I started talking about my problems, my disease in daily life. Testimony to the fact that talking about haemophilia openly was good are the messages I get to this day from dozens of people – not only patients living with haemophilia but other diseases as well – who, thanks to my exposure to the outside world, are breaking down their barriers and changing their lives for the better.”
Bottom line
“In the age of social media, we see a distorted reality full of good moments, beautiful, healthy people, and instant results. Too little do we say about the challenges of everyday life and the determination needed for our development. Now I know that coming out of the shadows and speaking openly about one’s challenges can be a cure for someone in need and an inspiration to change their life for the better.”
Jim is aged 66 and has Haemophilia A with a high titer inhibitor which he developed at age 14.
Maria Elisa Mancuso (MD, PhD) is a Haematologist and works as a Senior Haematology Consultant at the Center for Thrombosis and Haemorrhagic Diseases of IRCCS Humanitas Research Hospital in Rozzano, Milan, Italy. She is Adjunct Clinical Professor at Humanitas University. She obtained a post-degree in Clinical and Experimental Haematology and a PhD in Clinical Methodology. She is involved in clinical research and has published several original articles in peer-reviewed journals a The Lancet, Blood, Journal of Thrombosis and Haemostasis, Haematologica, Thrombosis and Haemostasis, British Journal of Haematology and Haemophilia. She is reviewer for several peer-reviewed journals and member of the Editorial Board of JTH. She is a member of several scientific societies (ISTH, WFH, ASH, EAHAD, SISET, AICE) and was a medical member of the Inhibitor Working Group of the European Hemophilia Consortium. She is co-chair of the ADVANCE Study Group. She has acted also as co-chair of the Scientific and Standardization Subcommittee of ISTH on FVIII, FIX and rare bleeding disorders. She has been involved as principal and co-investigator in several clinical trials, and she takes care of both children and adults with hemophilia and other congenital bleeding disorders with a specific scientific interest in novel therapies, prophylaxis, inhibitors, and chronic hepatitis C.
As a patient with factor II deficiency, the diagnostic and treatment of rare bleeding disorders is a matter dear to my heart. My motivation to participate in the work of the ERIN committee is to improve both diagnostic and treatment for patients with rare bleeding disorders across Europe.
Economist and financial expert by profession, executive coach and trainer by passion and haemophilia advocate by every drop of my blood through my son (who has severe haemophilia A with inhibitors). Bringing a good decade of practical experience from the corporate insurance world, laser focus, growth mindset and resilience from my own experience, offering you anything I can just do, in hope that together we can make life more fulfilled for those impacted by bleeding disorders.
Amy Owen-Wyard is a Registered Mental Health Nurse. With experience working with children, young people, their families and adults with severe and enduring mental health conditions. Amy was also involved in a service improvement to provide a holistic care approach for those in general hospitals to support both their mental and physical health, whilst sharing her expertise and knowledge in mental health with the wider multidisciplinary team.
