Patient Profile: Alyssa – Finding a Way Together
December 11, 2012 – Alyssa Altieri says, that without a doubt, her mom, Sandy is her best friend. Since Alyssa was diagnosed with thalassemia at just five months old, Sandy has been there for her every day.
“She has taken care of me every step of the way,” 25-year-old Alyssa explained. “She has handled all my problems and insurance worries and made sure I did my needle each day so I would have a life to enjoy.”
That needle is a painful daily reminder of Alyssa’s blood disorder; she must take a subcutaneous injection of Desferal, a medication that removes excess iron from her bloodstream, every night for 12 hours at a time.
“I know that this was the most difficult thing for my family when I was little,” Alyssa said. “My mom and dad would have to hold me down every night just to get the needle in me. I know that that would be painful for any parent.”
The initial diagnosis was especially difficult for her mom and dad. When they took baby Alyssa to their family doctor because of persistent illness that wasn’t getting better with treatment, the doctor referred them to the Children’s Hospital of Philadelphia. There, the physicians drew blood and ran tests, suspecting thalassemia due to Alyssa’s symptoms and the Altieri family’s Italian heritage.
(Thalassemia is particularly prevalent among people whose heritage extends back to certain geographic regions, such as the Mediterranean, northern Africa, the Middle East, south Asia, southeast Asia, China and the Caribbean.)
The family received the test results weeks later, confirming thalassemia. Some sources had told Alyssa’s parents that she likely wouldn’t make it to three years old. Fortunately, at the time of diagnosis Alyssa’s parents also found out about the Cooley’s Anemia Foundation (CAF).
“CAF has kept us informed on things like research and recent developments,” Alyssa explained. That information helps families and patients make informed decisions about medication and other treatment. It creates a sense of togetherness and purpose that helps the community make life easier for patients and their families.
And sometimes parents of thalassemia patients take the brunt of stress from the illness.
“Thalassemia has no real effect on my everyday life. I go through life like every normal person and try not to focus on the things that make it not so much fun, like having to do my needle every night,” Alyssa said. “But I know that my disorder has definitely affected my mom to this day. She constantly worries about my health and is always helping me fight my insurance battles. However, without her worrying, I might not be here today; she definitely keeps me on the right track.”
“Being a young mother when Alyssa was born with this disorder was a very difficult thing to handle for me,” Sandy explained. “The constant worry and the fear of her getting sick was always with me and still is today. I guess you never stop worrying about your children, even after they are grown.”
But today Alyssa is doing very well. She has a full-time job in an eye surgery center and has an active, energetic lifestyle that includes working out at the gym, shopping and going out with friends. Of course, there’s still plenty of time for hanging out with her family, especially with her mom Sandy.
“I would like people to know that thalassemia is a manageable disease, and those who are treated live a healthy and normal life just like everyone else,” Alyssa said.
Sandy agreed. “All of us coming together is the reason Alyssa has done so well. It’s why she is the beautiful young woman that she is today.”
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Thatcher Hullerman Cook