I am Judit, and I'm glad to share my story of living with primary myelofibrosis today.
I am 21 and about to finish my Advertising and Public Relations studies. I live in Girona, a beautiful city in Spain known for its medieval landscapes. I live with my family, who greatly support me. I am the youngest of three brothers and love travelling, reading, and doing yoga and Pilates classes.
My diagnosis story is quite interesting; it was a surprise since I hadn't heard about this disease. It all started when I went to the doctor to remove a wart from my hand, and they did some routine tests.
I was 18 years old, and it had been a long time since I had a medical check-up. So when they told me I had primary myelofibrosis. A rain of questions appeared in my head. What was that? How was it going to affect my life? What treatment did he have? What prognosis did he have?
At first, I felt a lot of fear and uncertainty. I searched for information online, but all I found was negative and alarming data. In addition, my diagnosis coincided with the COVID-19 pandemic, which made things even more difficult. I couldn't see my friends or leave the house. I felt lonely and troubled.
Little by little, I was finding support and hope. Thanks to the medical attention I received, I could better understand my disease and the advances being made in its research. Thanks to my family, I could always feel loved and accompanied. Thanks to my psychologist, I could express my emotions and learn to manage them better. And thanks to the Global MPN Scientific Foundation, I connected with other people with primary myelofibrosis and shared experiences and advice.
I live with primary myelofibrosis, but I don't live for it. I have learned to accept my reality and adapt to the changes it implies. I have discovered that I have great inner strength and that I can overcome obstacles that arise. I have valued life's essential things more and enjoyed every moment more. I have continued my personal and professional projects and fulfilled some of my dreams.
For this reason, I want to encourage you, who also have primary myelofibrosis or some other MPN, not to give up or let yourself be overcome by fear or sadness. I know it's not easy, but it's not impossible either. Many people love you and help you. Many people work to improve your quality of life. Many people understand you and accompany you. You are not alone or alone. Together, we are stronger.
I hope you liked my first post and that it inspired or comforted you. If you want to know more about me or my disease, you can follow me on Global MPN Scientific Foundation or our Facebook patient group. You can also leave your comments or questions below. I will be delighted to read and answer you.
A big hug!