Haemophilia is a severe genetic condition characterised by a blood clotting disorder. It can cause incredibly painful strokes, whether in the joints, muscles or internal organs. In short, it can lead to the destruction of our bodies, and any injury poses a huge threat to our health and lives.
17 April marks World Haemophilia 🩸 Day, which is a special moment for me. I’ve decided to share a small reflection in this post. Although it’s about my personal struggle with this difficult disease, I hope it has a universal meaning.
Giving to others brings great joy
In the photo above you can see my four main passions:
🎓 Constantly sharing 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 sport shooting.
What you can’t see, but which affects my daily life, is the disease. Everyday life with haemophilia includes pain, sudden strokes, frustration, restricted movement, arthropathy, joint stiffness (especially in winter), complications from co-morbidities, or having to take intravenous medication at least 104 times a year.
Challenges are part of what shapes our character
There is no denying that my illness has caused me to miss out on many opportunities in my life. I have missed out on attending many events, being on stage, giving talks and workshops, taking part in panel discussions, working at university, working with the government, taking part in interviews and TV programmes, travelling abroad and meeting inspiring people. I could go on and on.
Each success and goal I achieved took time, enormous effort and even more determination. Despite this, I tried never to give up and today I believe that this serious illness has helped to shape my character and keep my life on track. However you look at it, I am grateful to it for that.
Each of us faces obstacles and challenges
I think we all have our own 'haemophilia’ in life – an obstacle that seems insurmountable. But it is how we respond to this challenge that determines where we ultimately go.
Please remember that everyone has difficulties and challenges, even if they don’t talk about them. They also have the opportunity to overcome their own barriers, to develop themselves and to inspire others to do the same. I think the last point is particularly important. For years I was afraid to talk about my illness, and in business I have never allowed it to overshadow in any way how I work, what I do and what I want to achieve. I never wanted to be remembered as a good entrepreneur with a disease, or to be told by a sick person that „I have achieved something”. All or nothing. Even if I had to work two, three or thirty times harder. No one knew about my illness.
But as the years went by, with the encouragement of my wife and then more and more people, including other haemophiliacs, I began to break down my barriers. I began to talk about the problems, the illness and the successes. The proof that this was a good move are the messages I still receive today from dozens of people who, thanks to my outreach, are breaking down their barriers and changing their lives for the better.
I would like to draw your attention to this.
Coming out of the shadows and talking openly about your challenges can be a healing experience for someone in need, as well as an inspiration to change your life for the better.
On this very special occasion, I wish you strength and determination to overcome all your obstacles in life, as well as perseverance and continued success.
