At PAN, we believe no one should have to manage a serious illness alone. To honor the tireless work of family caregivers, we’re delighted to share stories from those who have benefited from their compassion and dedication.
This is Joan’s story—in her own words.
For 7 months I was in and out of the hospital for weekly medical testing. Unbearable emotional stress was part of my daily life. When I was finally diagnosed, it rocked my world and for a few moments I became speechless. My oncologist said, “Get a piece of paper and write this down: Myelodysplastic syndrome.” I had never heard of it. She told me to stay off the internet until my next appointment. Did I listen? Nope. What I read terrified me.
Adjusting to my new normal
Myelodysplastic syndrome (MDS) is a rare blood disease. Most people with MDS, like me, develop anemia and need blood transfusions. Since 2014 my world has centered on MDS. My new normal consists of weekly visits to the blood lab, self-administered injections and medication. My active life is more sedentary due my compromised immune system.
There were many times where I felt isolated and frightened for my future. At that point, my family support became stronger.
Getting through tough times together
Before my diagnosis, it used to feel like my family and I lived on opposite sides of the globe—even though we just live on different coasts. When I was first diagnosed, my sisters came to visit me and instead of standing around with tears in our eyes, we decided there wasn’t room in our lives for doom and gloom. We decided to do as much as we could, even without knowing what my future would hold.
Since then, my family has been extremely attentive. We’re constantly communicating, and they offer me incredible emotional support. When I go in to get my transfusions, they give me a call or send me a prayer. We became much closer after my diagnosis. They really took an interest in my disease—probably because no one has ever heard of it! They also encourage me to keep busy by telling me that they admire how much I’m able to do despite my disease.
Helping others and improving my quality of life
The fighting attitude my family and I adopted led me to become a patient advocate. I became a member of the MDS Foundation and the Aplastic Anemia and Myelodysplastic Syndrome International Foundation, and have been participating in their annual conferences. I was even featured in a CURE Magazine article on why blood counts matter in MDS.
I was able to connect to the PAN Foundation at a time when the high cost of my treatment began affecting my life. I have been a member of the PAN community since 2015. I feel truly blessed by PAN’s assistance.
When you get diagnosed with a rare disease and you’re told that you will have to be on a medication for the rest of your life, you become stressed about not only your disease but the cost of trying to keep living.
If it weren’t for organizations like PAN, I wouldn’t be able to live—my quality of life would be altered.
As a patient, I had to decide to fight for my life but I know that I have many partners—like PAN and my family—as I battle this disease. Life is no longer frightful, but hopeful.
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