Believe, educate, advocate – a #thisway story
In the framework of our #thisway campaign, the EHC interviewed Annabel Kattai (23), a patient with von Willebrand Disease, who shared with us how she overcame her struggles around sports and injections, and how she looks after her mental and physical health.
We hope you find Annabel’s story inspirational and her tips helpful. If you have any questions or would like to get in touch with us, please do not hesitate to drop us an email.
Annabel Kattai (23), Estonia
I was diagnosed with the hereditary bleeding disorder von Willebrand at the age of 4 when I was admitted to the hospital. Initially, treatment was only during bleeding episodes, but it eventually shifted to a twice-weekly prophylaxis regimen. When I was diagnosed, my symptoms were only nosebleeds and minor bruises, so despite my condition, I led an active life, engaging in sports like volleyball and running.
However, around the age of 18, I started having internal bleeding, which I didn’t understand at first and thought it was muscle cramps. As the pain became more and more intense, my mother took me to the hospital, where we found out that it was indeed internal bleeding. From then on, I couldn’t play volleyball anymore because every stronger ball hit caused more bleeding.
Transitioning to a larger hospital, and adapting to the environment took time, but fortunately, I found supportive medical staff. Prophylaxis became my routine, and in 2022, a port eased injections. Unfortunately, an infection led to its removal in 2023, taking a toll on my mental health as I returned to regular cannula injections, which I fear due to the pain.
My physical activity now includes walking and disc golf, and biking and swimming in the summer. I try to complete at least 10,000 steps a day, but spontaneous bleeding in the joints and muscles sometimes disrupts my routine. I adjust, even if it means walking 1,000 or 3,000 steps only. If there are worse bleeds that prevent movement, I take a day off and do small activities like studying.
I keep my mental health in check by baking. I began baking at a young age – my very first cakes came out of the oven when I was just 7 years old. It all started when a situation arose at school where others scolded me, saying, “You’re at home and bleeding again. Girls don’t have bleeding disorders, don’t you know that?”
I turned to baking whenever I felt unheard or doubted, which weighed heavily on my mental health as a young girl. Eventually, I discovered that baking could be a hobby, especially when I wasn’t feeling my best—and it turned out I was pretty good at it! Baking eases my stress and brings me calm during times when I feel powerless. Sadly, these days I can’t bake as much, especially if my legs are bleeding, as most of the baking work involves standing on my feet.
My openness about being a girl with a bleeding disorder garnered attention. Faced with misconceptions, I embarked on an educational journey. Sharing my story on social media, conducting lectures at school on how to spot, recognise, and care for a person with a bleeding disorder, and participating in awareness campaigns, I aimed to educate others. It’s rewarding to know that my efforts have helped others get diagnosed and treated. On top of that, every new person who came into my life found out in a matter of hours that I have a bleeding disorder and what it entails, and so far, it hasn’t scared anyone away!
The main advice I would give to patients who may be struggling with the same or similar problems is simply this: believe in yourself. If you sense something isn’t right, don’t hesitate to get it checked out. The earlier you seek treatment, the higher your quality of life can be.
I would advise women, to stay true to themselves – if you are sure that you have a bleeding disorder, then go out of your way to be listened to and have the appropriate tests done, because women can also have a bleeding disorder.
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.
