Believe, educate, advocate – A #ThisWay Story

In the framework of our #ThisWay Campaign, the EHC interviewed Gertu Saaretalu, a severe haemophilia A patient from Estonia. She shared her journey from a late diagnosis and the challenges of growing up with a bleeding disorder to building resilience, finding her own coping strategies, and advocating for awareness and self-trust. We hope you find Gertu’s story inspirational. If you have any questions, please do not hesitate to drop us an email.

Gertu (Estonia), a patient with severe haemophilia A

I was born in 1992 as a healthy child. When growing up, I experienced more accidents than other children, and I also would recover longer, but things started to get more serious when I was four years old. I was playing at a playground with iron swings when, due to carelessness, one of the swings struck my head. I was taken to the hospital, where my head wound needed stitches, but the wound bled underneath and had to be reopened and restitched several times. I also required blood transfusions and stayed in the hospital for half a year. What originally was a 1 centimetre cut has now left me with a 10 centimetre scar on my head.

During this time, my mother asked the doctors whether I might have a bleeding disorder, as they could not explain why the bleeding didn’t stop. They told her that it was impossible for me to have a bleeding disorder because I was a girl. We went home without any real answers, but with relief that I was still alive and could continue my life as a little girl. 

When I was 11, I was hospitalised with severe stomach pain. After my appendix was removed, I received an injection into the muscle of my upper arm. The next morning, my entire arm was blue. I was asked what had happened, but I was as shocked as they. Following this, my doctor referred me to the haematology department for a clotting test.

Due to my illness, my mother decided to go to medical school and become a nurse. Thanks to her training, she gained the knowledge and skills we needed to navigate this condition more confidently. She learned how to give injections at home, how to reduce pain, and how to support me in ways that made treatment feel safer and less frightening.

I am living proof that an illness does not choose a gender, and I hope that sharing my story helps increase awareness, and with that, we have a safer environment.

As a child, I often compared myself to other children who could take part in physical activities while I had to sit out with yet another twisted ankle or injury. I genuinely wanted to compete and be involved, but repeated bleeds and pain meant I simply could not join in. At school, we had a yearly sports day, yet I was never able to participate because of my health issues. After trying different sports and always ending up hurt, I eventually began to fear the pain more than the injuries themselves.

When I was 13, a substitute doctor told me that I would be in a wheelchair by the age of 20. Hearing this at such a young age was a shock and showed me how powerful words can be. The prediction did not come true, but it did make me more cautious. At the time, I did not receive prophylactic treatment, and my medication lasted only six hours before another injection was needed. If anything happened, I had to go straight to the hospital. Combined with the doctor’s warning and with my experience, physical activity started to feel unsafe.

One sport I truly loved was horseback riding. I did it for a few years until I fell and broke my collarbone. Around the same period, I was still carrying the fear of “ending up in a wheelchair”, and that accident became a turning point. After that, I shifted my focus toward activities that did not put my well-being at risk. I discovered drawing, photography, reading, and long walks or bike rides in nature. Instead of competing, I found much more joy in being and creating.

As I grew older, this creative interest evolved into designing and sewing photo pillows for my small business. My physical activity today comes mainly from spending time outdoors with our lovely dog Luna. Having a dog has been a positive influence — no matter the weather, I always need to go out, which helps me keep daily movement in my life at my own tempo.

To cope with feeling different from others, I had to find strategies that helped me build my own path. Creativity and gentle, consistent activity have been the two things that supported me most.

Through my teenage years and into adulthood, I had to learn how to adapt to my circumstances and manage both pain and stress. Over time, I developed coping skills that work for me, even if they may not work for everyone. Maintaining a positive outlook has been essential, and I am grateful for the strong support of my partner, family, friends, our national member organisation (NMO) and medical personnel.

As I became an adult, I faced moments in the emergency room where doctors did not know how to manage my condition. Their solution was sometimes to send me home without treatment. These experiences taught me early on to listen closely to my body and to stand up for myself. There were times when I knew something was wrong but could not get help without pushing for it. Situations like these made me more assertive and more confident in insisting on the treatment I needed, even when it felt uncomfortable. It is important to trust yourself — you know your body best.

Over the years, I had been going to the gym, but a major setback a few years ago forced me to step back. Now I am preparing to return, but with patience and a focus on safety. My plan is to start by walking more and doing light bodyweight exercises at home, gradually increasing the intensity over time.

At first, I received treatment only when needed, which provided coverage for about six hours. Now I am on prophylactic treatment, meaning I inject myself regularly and follow a strict schedule. I was initially very excited about the new treatment, but soon I discovered the “price” of it — I had to stay consistent and face the fear of injecting myself every time. These small struggles came as a surprise, especially because I am truly grateful for this medicine and the freedom it has given me from many of the pains I experienced before. Fortunately, over time, I have overcome most of these challenges, and I am now much more accustomed to this new treatment.

Getting external help is very important. My NMO has been a key source of support. Through it, I gained valuable knowledge that allows me to speak confidently and assert myself when dealing with healthcare providers. Knowing your rights and what to expect in treatment is essential.

I also believe that taking part in your country’s NMO activities makes a real difference. By participating, talking with others, and sharing experiences, you become more aware and gain the knowledge needed to stay safe and make the right decisions when it matters. Staying informed starts with being involved.

Although there is a membership fee for the NMO, what you gain far outweighs the cost. You receive knowledge, guidance, and a sense of belonging that makes life more manageable. The best way to protect yourself is through awareness.

To summarise: be strong, stay aware, and it might save your life.

Finally, I want readers to remember that even though we live with a chronic illness, we should not compare ourselves to others. We must focus on living life in our own way, because being “normal” is not what defines happiness.