12 Mar Meet Manolis- A thalassemia patient from Greece
Every patient has a unique story to share. We are thrilled to have you meet Manolis for this month’s thalassemia patient story.
Originally from Crete, Manolis has overcome the challenges of a thalassemia patient his whole life. What started as a short interview became a lovely discussion about cultural views of the disease, starting a family, and living life to the fullest as someone with thalassemia.
Question 1: Who in your community has been most important during your journey and why?
Manolis: I was diagnosed with Thalassemia at three years of age and don’t know a life without it. My mom was critical in supporting me as a child and now as an adult, it is my wife. She continues to help me through the daily challenges of the disease and her support makes it easier. My kids play a big role too. I always want to set a good example and not have them see their father as sick. I want them to proudly say their father has thalassemia because it is not something to hide or be ashamed of.
Question 2: When was the most challenging time for you managing your disease?
Manolis: When I was a teenager I struggled, mainly because of the ignorance of others and a lack of understanding of what it means to grow up at as thalassemia patient. There’s this concept that society tries to marginalize anything that isn’t pleasant such as a chronic disease. I never let that stop me. When people would tell me I couldn’t do something because of my condition I tried anyway. Thalassemia has never been an obstacle in my life and often motivated me to do things I might not have normally. I’ve scuba dived, parasailed, and have two beautiful children with my wife. It is important to me to be someone who advocates for awareness and care and is a thriving individual living the life I choose for myself.
Question 3: How does the app ThaliMe help manage your disease?
Manolis: Support and community are critical for every Thalassemia patient. My family has been a big supporter of me. When I was a child it was my parents, and now my wife is my biggest advocate. A person with thalassemia is just like a healthy person and we need a community where we can support each other. I hope that by sharing my story with the ThaliMe community I can help spread the message that it is in our hands to show society what thalassemia is. ThaliMe gives the chance for a thalassemia patient to connect and communicate with others, share experiences, exchange views, opinions, and knowledge. Thalime’s health monitoring tools developed just for thalassemia patients keep the health tracking we need to document and organize to show a doctor, which is very helpful. This also helps so that we can manage ourselves.
We had such a wonderful time meeting Manolis and hearing his story. No patient should be alone in their journey, and ThaliMe helps connect patients to each other and also manage their disease with in-app tracking tools. Watch Manolis’s story here. You can also check out our Italian thalassemia patient story here. Stay tuned for more exclusive content from our blog and join the growing global community of thalassemia patients in ThaliMe. Joining the community is free! Click here to connect with others, share knowledge, and receive support to make everyday matter.
Want to learn more about Curatio? You can visit our website: curatio.me