Manysavanh “Loy” Phothisane and Jay Ratttanavong are two Lao Americans who can be found at many community events and causes in Minnesota, volunteering their time and energy. Many around them may not know that they’re also affected with a blood disorder called thalassemia, which requires frequent hospitalizations and blood transfusions. They’re hosting a Care Walk this Sunday, May 17th, 2015 to bring awareness of this health condition and to raise funds for more research. Below is a story shared by Manysavanh on living with thalassemia and why she’s walking.
Why I’m walking on May 17th, 2015: As some of you know –or may have observed—I frequently receive blood transfusions because my body cannot produce normal hemoglobin, the protein in red blood cells that carries oxygen. Before I could barely form sentences, I was diagnosed with a serious form of Thalassemia, requiring me to depend on other people’s blood to survive (thank you and many blessings if you’ve ever donated blood).
I’ve never shared this with anyone before, but I used to live my life with little hope that I would live long enough to land the career of my dreams or experience the kind of happiness that marriage and having children could bring. At the time, I only knew of the ancient research that said given the proper treatment, I might live to see my 30’s. I tried – and I think successfully – to hide the fact that I didn’t want to plan ahead for my future that I believed wouldn’t happen so instead of telling people my 20-year plan, I always limited it to 2 or 3 years. Then one day something sparked inside of me that forced me to stop believing my life would be cut short. After countless years of undergoing treatment that I often didn’t understand or question, I knew it was time to take control of my life.
Fortunately a few years ago I came to discover the Cooley’s Anemia Foundation (CAF) while doing some late night research on my own. The CAF is a non-profit organization that serves people afflicted with various forms of Thalassemia (Cooley’s Anemia). Last June, I had the opportunity to attend the Patient and Family Conference –an annual event hosted by the CAF to share new research and updated treatment procedures, in addition to bringing together those living with Thalassemia and their families—where I met other Thal pals (I still keep in touch with some on a daily basis, which I’m so thankful for!!) as well as some of the medical professionals who have dedicated their lives to advancing the research and treatment of Thalassemia in order to ensure my Thal pals and I can live a somewhat “normal” life.
Now I’m 25, finished with college and in search of a career that I can be proud of. I’ve even started dreaming of having a family of my own some day. All this is possible because of people who have dedicated their lives to researching treatment options and finding potential cures for Thalassemia. Thanks to the amazing team of doctors, scientists, and countless professionals who have contributed their energy to the Cooley’s Anemia Foundation, I – as well as my sister and others living with Thalassemia – can look forward to growing old. This is why my friends, Jay Rattanavong and Trinayani Leigh and myself are walking on May 17! We hope to raise $1000 or more to donate to the Cooley’s Anemia Foundation so that they can continue to do their work in helping those afflicted with Thalassemia.
Please join us if you can. After the walk, we’ll be having a BBQ/potluck to thank everyone for joining us. And, of course donations are welcome here.
1:00 PM rain/shine/snow
Sunset Pond Park 3813 Iris Circle
Burnsville, MN 55337
According to the Cooley’s Anemia Foundation, “Thalassemia is the name of a group of genetic blood disorders. To understand how thalassemia affects the human body, you must first understand a little about how blood is made. Hemoglobin is the oxygen-carrying component of the red blood cells. It consists of two different proteins, an alpha and a beta. If the body doesn’t produce enough of either of these two proteins, the red blood cells do not form properly and cannot carry sufficient oxygen. The result is anemia that begins in early childhood and lasts throughout life. It is commonly found in Africa, the Middle East, India, Southeast Asia, southern China, and occasionally the Mediterranean region.”
You can learn more about thalassemia on the Cooley’s Anemia Foundation: http://www.cooleysanemia.org/