Hello everyone, my name is Tianshuai Liu, I am 29 years old. I come from China. I am a patient with severe Hemophilia A.

Since I was born, I have experienced bruising, bleeding gums, nosebleed, and joint bleeding. My family was very worried about my health, but after visiting many hospitals and undergoing tests, the diagnosis remained uncertain. It wasn’t until I was 6 years old that we went to Suzhou and I was diagnosed with hemophilia A. At that time, my coagulation factor VIII level was 0%.

During my childhood, due to the high cost of medication and limited family income, I always tried to endure the pain as long as possible. We only opted for clotting factor replacement therapy when the pain became unbearable or when it was a life-threatening bleeding episode. My left leg was fractured twice, but due to the risks of surgery, I could only choose conservative treatment. Ultimately, this resulted in limited joint movement and muscle atrophy. Facing joint bleeding, I was bedridden from two months to a year. For many years, my knees and left elbow suffered from joint bleeding, leading to limited mobility, deformity, and target joint damage. I needed assistance to walk, and hemophilia forced me to leave school earlier than expected. As a result, I was spending long periods at home with nothing to do. In 2015, I even experienced intracranial hemorrhage and was sent to the emergency room by the ambulance.

At that time, my future was filled with uncertainties. Firstly, due to the costs of treatment for hemophilia, I placed a very heavy financial burden on my family. Secondly, I didn’t know what skills I could use to support myself. I tried various jobs, but I couldn’t maintain them due to my illness.

Until 2017, with medical insurance and assistance programs of pharmaceutical companies, my medication costs were significantly reduced. That year, through an online charity training program I had previously participated in, I found an online job and gradually began to earn some income. Also, I started dating a kind and beautiful girl named MayMay in 2017. We developed a romantic relationship. We supported each other through many difficult times. MayMay encouraged me to undergo tertiary prophylaxis and kept records of my injections. In 2017, I also learned self-injection skills.

My health was slowly improving, but the illness has also brought significant challenges to our relationship. Due to repeated bleeding in the target joint, my mobility was limited. When we went out for a date, I needed to hold her shoulder to walk. I remember once we wanted to watch a movie, even though the movie theatre was only 1 kilometer away. For a healthy young person, it wouldn’t take much time. But because of my limited joint mobility, it was extremely difficult for me to walk such a long distance. I had to stop and rest for a long time after just a few steps while holding onto her shoulder. By the time we got to the movie theatre, the movie was already halfway through. There are many other inconveniences caused by the illness that have presented challenges to our relationship, but with her support, we are both facing them bravely.

In 2018, a hospital in my city started offering joint rehabilitation for patients with hemophilia, including manual therapy and physical therapy using machines. Initially, I was worried about its effectiveness and whether it would worsen my joint condition. However, for a better future, with MayMay’s encouragement and support, we started clotting factor injections ahead of schedule and began joint rehabilitation. During the manual therapy, the doctor forcefully straightened my joints, which I had long been unable to straighten. The pain was so intense that even in winter, I would break out in a sweat after taking off my down jacket. But the good news is that after a year of consistent rehabilitation, I can now walk independently, and my joint mobility has greatly improved.

During that year, we also created a WeChat public account called “hemocat” sharing self-management experiences for adolescents and adults with hemophilia from the perspective of patients with hemophilia and caregivers, combining personal experiences with the latest international hemophilia research.

In 2025, as a patient with hemophilia, I joined other patients with hemophilia to create a company dedicated to becoming a social enterprise, providing employment opportunities for patients with rare diseases, including hemophilia, and people with disabilities. By 2025, 90% of the company’s employees was people with disabilities. Our team hopes to help more people with rare diseases and people with disabilities to achieve stable employment and social integration.

Our story continues to be written. Along the way, I am deeply grateful for the help from medical insurance and charities, which enabled me to receive timely treatment; I am also grateful for the online employment training program for people with rare diseases, which gave me direction and opportunities to try. Most of all, I want to thank MayMay for her unconditional love, support and companionship. Without her, I might not have been able to get through many difficult times.

Now I use clotting factor VIII three times a week. I can walk and live independently. I can even drive to where I want to go, and have a cat named “Meow Handsome” by my side. I am also working hard to make my career better and better, and I look forward to the day when I can end my long-distance relationship with MayMay and live together with her.

Finally, I want to say to every patient with hemophilia that our lives may be more difficult than others, but we are not inferior. As long as we persist in treatment and learn self-management, we can also walk our own path step by step.

I also hope that society can see that we not only need to be helped, but we can also create value and bring changes to others. The future may still hold challenges, but I believe that we can all move towards a better life.