20 Dec Meet Patrizio – A Thalassemia Patient from Italy
Every patient has a unique story to share. That’s why we reached out to a Thalassemia patient to hear their story in person. Thalassemia is an inherited blood disorder causing the body to makes an abnormal form of hemoglobin that destroys red blood cells, leading to anemia. We recently released a free mobile app specifically designed for Thalassemia patients and their families, ThaliMe. ThaliMe provides helpful medication tracking tools and social matching on a private, easy to use mobile platform. Globally available in English, the app will also be translated into Arabic, Italian, and Greek in the New Year. Learn more at www.thalime.com
We wanted to understand the journey not just as a patient, but also what matters to them most in life. While any medical condition can be a big part of someone’s life, the disease is not what defines them. We were particularly interested to hear from a Thalassemia patient about what matters to them most in life. The first in a four-part series, each blog will focus on a patient from a specific region of the world.
We are very excited to share with you our first patient story. When looking for someone to interview, we reached out to the community in Rome and we connected with charismatic Patrizio from the Tuscany region. We were honored to have the chance to meet him and hear his story as a Thalassemia patient.
Question 1: Who in your community has been most important during your journey and why?
Patrizio: I was diagnosed with Thalassemia at a young age and so was my sister. As kids, we would have treatments together. Having someone there with me who understood what I was going through was important. Today, we still meet to help each other with our treatments, even though we live in different houses. In addition to my sister, singing in the local choir has been very important in my community support. It is with singing that I am able to feel satisfied at the end of the day. This is important for a Thalassemia patient, to find things that make us feel good. That is why I decided to start singing.
Question 2: When was the most challenging time for you managing your disease?
Patrizio: When I was a teenager, I thought I could control everything on my own, that I didn’t need help. I wanted to be independent like other kids, so I ignored following treatment plans like I should. I was tired and it was difficult to complete daily tasks and keep up with friends. While I could do things other kids can, I had to accept the fact that Thalassemia was a part of my life and I had to stay on top of taking care of myself. Today I still struggle particularly when traveling, but having the support of friends and family helps.
Question 3: How does the app ThaliMe help manage your disease?
Patrizio: Community is so important for every Thalassemia patient. I became good friends with the other people I had transfusion therapies with as a child. We comfort each other, and the community support in ThaiMe is important for that. It’s also important to keep each other on track. Support from my peers helps me stay on top of my disease. Additionally, the ThaliMe app stores all my important medical information related to my condition. With this, I can easily manage my disease on my own and when traveling. The reminders are helpful for me to make appointments and therapy sessions. ThaliMe is a valuable tool to connect every Thalassemia patient just like me.
We had such a wonderful time meeting Patrizio and hearing his story. No patient should be alone in their journey, and Curatio designed ThaliMe to help connect patients to each other and also manage their disease with in-app tracking tools. Stay tuned for more patient stories in the New Year!
Download ThaliMe, the FREE app that gives you the health tracking tools and social connection you need on a private mobile platform to manage your disease.
Want to learn more about Thalime? You can visit our website: www.thalime.com