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February 21, 2017- Lisa Falco Guidice is an active member of the CAF patient community, and we thank her for sharing her inspiring story.
I am a proud Jersey girl, born in Summit and raised in Florham Park. After being diagnosed with thalassemia major at 6 months old, my mother did everything she could to ensure that I lived a normal childhood. My favorite thing to do growing up was to follow my sister around and do whatever she was doing with her friends. Although I had to get blood transfusions every 2 weeks, my mom made me feel like having thalassemia did not define me and tried to downplay the role that this disorder had in my life. At the same time, she was very strict about where I could go and what I could do, so I was definitely sheltered.
When I was three years old, I started using the Desferal pump. This is a special device that pumps medication into my body to reduce the amount of iron in my blood. It was challenging to have to sleep with a needle in my stomach every night, but I would say I had a very happy childhood overall.
Unfortunately when I was 15 years old, I had two heart attacks and became a diabetic but I didn’t let this discourage me. I pushed through, kept up with my medication and blood transfusions, and led a pretty normal life. Now I am in my 13th year of marriage and I am happier than ever! My family and my friends are what push me to never give up. I am striving to live as long as possible to see my niece and nephew grow up, get married, and become successful.
Cooley’s Anemia Foundation has been there for me through it all. The Foundation has provided me with many different resources such as helping out with insurance issues, introducing me to a community of people just like me, and providing me with a huge support system. My experience has taught me that thalassemia is not a death sentence. As long as you are being responsible and taking your required medications, you are capable of living a beautiful and long life. All my life I was told by doctors that I would never make it to adulthood but I am now 40 years old and proud! I wake up every day joyful to be alive and to create new memories.
For those who are going through what I go through, I would like to let you know that this disorder does not have to define you or break you down. Even though thalassemia will always be a part of you, it is not who you are. Live your life the way you see fit and do the things that make you happy. Make sure to always surround yourself with positive energy and with those who care for you. You are not alone in your journey.