To celebrate World Hemophilia Day 2021 (April 17), Takeda is highlighting the stories of hemophilia “Rare Stars” to honor inspirational members of the rare bleeding disorders community. Through this campaign, we share the experiences of two individuals. Their powerful stories demonstrate character and exceptional fortitude in the face of challenges and they embody the resilience and strength of the wider hemophilia community, especially in a year where the world has had to adapt to significant change.
Rare is strong. Rare is proud. Rare is many. Rare is resilient.
What is the significance of World Hemophilia Day for you?
World hemophilia day is very important to show people without hemophilia the burden and impact on patients’ lives and how they can support this community. For people with hemophilia, it also allows the chance for them to feel valued and for their experience to be heard in society. This really means a lot for them.
Tell us about your relationship to hemophilia.
I am a mother of a patient with hemophilia A who was diagnosed at nine months old. When my son was diagnosed 20 years ago, hemophilia was been a relatively new disease in my community. As a result, there were limited resources, medication and professional experts available and little knowledge of the disease. This is why I committed to myself that I would fight for my kid to receive comprehensive care.
How would you describe your hemophilia journey and how it has impacted your life?
As the family of a boy with hemophilia, we are not only aware of the disease burden but also how his experience of living in the real world can be affected. It takes a family effort, including his grandparents’ support to take good care of him. As a mother who has a full-time job, I took leave to accommodate the time he needed to be in the hospital. It obviously impacted my career but I insisted on doing so.
My hemophilia journey has changed over a period of time. I remember the day that I accepted I would only take a risk if it meant that my son could join his classes like other students.
Another impact that hurts my heart is the activity limitation caused by hemophilia. As a teenager, my son wanted to play and live an active life but he couldn’t. As a parent, I feel he became introverted as a result.
How has the COVID-19 pandemic affected the hemophilia community in your area?
During the COVID-19 pandemic, the government requested that people socially and physically distance to avoid transmission. The transportation system was shut down due to the policy requiring people to stay at home.
While the hospital has offered tele-medicine for most chronic disease patients, this does not include patients with hemophilia. Hemophilia medication is defined as a high cost-drug that requires cold-chain distribution and since logistics in my city couldn’t cover cold-chain, hemophilia patients needed to go to hospital without any exception. Unfortunately, as the transportation system was shut down, some patients can’t visit hospital as usual. Additionally, even for patients who have their own transportation, they can visit the hospital for medication but not for consulting or other services.
We also used to regularly have group activities with patients to allow them to empower and motivate each other during visits, which had to be cancelled too.
I have also heard that some patients with hemophilia lost their jobs during this difficult situation.
How has your healthcare team worked hard to sustain care throughout the COVID-19 pandemic?
I am actually the only one in the healthcare team who provides services for hemophilia patients.
How has the hemophilia community adapted to the changes caused by the COVID-19 pandemic?
Physical distancing has become a social requirement to help protect people during the COVID-19 pandemic, with no exception for those with hemophilia. During this difficult time and the challenges in accessing treatment and medication, individual patients have needed to self-manage their condition to avoid bleeds and infection with limited resources and support.
For people with hemophilia, it has been a good lesson on learning how to take care for themselves first, as well as finding ways to still support each other. I have a positive point of view on this situation. I strongly believe that patients already know how to utilize available resources effectively. They also know how to live and protect themselves from bleeds and COVID-19. The most important thing is that they know how to rely on community support before asking for help from their healthcare team.
What have you seen the hemophilia community do in 2020 that has inspired you?
I have been very impressed that patients and the community have cooperated well to maintain and support both the mental and physical health of each other. I have also seen how self-reliant many hemophilia patients can be regardless of their hemophilia.
What are you hopeful for in the year ahead?
Obviously, I wish to go back to a normal life. I hope the COVID-19 vaccine will help us escape from this tragedy and that everyone can adapt to live carefully. Moreover, I am hoping for a better hemophilia care in the intermediate, and long-term I hope that hemophilia can be cured. Finally, I wish for a society where hemophilia patients can live with the same opportunities and respect as anyone else.
What message of positivity would you like to share with the community on World Hemophilia Day 2021?
Thank you to the hemophilia community for the opportunity you offer for people with hemophilia to live a normal life and for seeing hemophilia patients as people born with hemophilia who can contribute to their communities, not just patients.