By Pasusant, Chronic myeloid leukemia, Thailand, February 25, 2021
I was diagnosed with a chronic myeloid leukemia (CML) more than 20 years ago. I was 35 at the time. It’s hard to explain what it feels like to be diagnosed with a rare disease, especially at this age.
I was told that there was no curable therapy and could be dead within 3-5 years if no proper treatment.
I had my first enlarged heart symthom and other side effects. This is the moment when I became an advocate without knowing it. I realized that this was my life and there had to be a better option. I started doing research on the internet and trying to do everything I could to educate myself about CML. I found a doctor that was an cml expert and this probably saved my life. By becoming informed and educated, I was able to participate in the decisions being made about my life. To me, being an advocate is learning how to speak up for yourself. I am now part of my healthcare team. I make informed decisions about my healthcare, and I’m an advocate for myself and my journey.
Now, I try to advocate for myself and for other CML patients at every opportunity that I get. I’ve become involved in social media to connect with other patients and patient advocates. Social media is also a great way to bring awareness to CML. I have made connections with companies involved in the CML community and rare diseases. I’ve become involved locally by joining Thai CML Patient Group as a committee and established MPN Patient Advocacy Group Thailand as Founder and by connecting with other local patients. I’m constantly trying to keep up with current information from reputable sources. Being educated empowers me. It gives me my voice to help bring awareness and to advocate for both CML and MPN.
As a CML patient, it’s important to ask questions, become educated, and get involved so that you know you are receiving the best treatment possible. Remember that you are part of your healthcare team and you are your own best advocate!