ADA — We are Andrea and Alyson Hoffman from Marion, Ohio — the “Hoffman twins,” to which we are most commonly referred. We are 19-year-old identical twins, currently attending Ohio Northern University, set to graduate in the spring of 2022.
May is National Cystic Fibrosis Awareness Month, and it serves as a great opportunity for us to share our story to spread awareness and education about CF.
On the outside, we look like any other college students; however, on the inside and behind the scenes, a daily battle is being waged against this life-limiting disease, from which we both suffer, primarily affecting the lungs, the digestive system and other major organs in our bodies. To date, there are approximately 30,000 people living with this disease. The current average life expectancy for people born today with cystic fibrosis is in the mid to late 40s. At this time, there is no cure for cystic fibrosis — only treatments for the symptoms of the disease.
This disease sometimes makes it difficult to breathe, as thick, sticky mucus accumulates in our lungs, inviting infection, breeding bacteria and causing inflammation and deteriorating damage to our lungs. Because it also affects the digestive system, we have to take enzymes when we eat to help us to absorb calories and digest our food. We are on a high calorie, high fat, high salt, high protein diet — which means that we can eat anything and everything we want!
There are many things that we have to do behind the scenes to stay healthy in order to lengthen and strengthen our lives. For those who are not around us all the time, what we do seems staggering — but for us, it is a part of our everyday routine. We take more than 20 pills per day and do five aerosol treatments. We use a device called The Vest, a machine that shakes our lungs to break up mucus, along with huff coughing and our breathing treatments, to help us keep our lungs clear. We do this for 40 minutes twice a day, and more often when we are sick. While we do our vest treatments, we usually do homework, watch TV, listen to music and occasionally take a nap.
Many people wonder how we can be so positive when our lives have been and will continue to be more challenging. We have never allowed CF to define who we are. Growing up with this disease has not been easy. CF has caused many twists and turns in our lives. Our family, our friends and our faith have been there each step of the way on our journey, which presents us with an opportunity to infuse hope into our lives and into the lives of others we meet along the way.
We consider living with cystic fibrosis as a blessing in disguise, as we are able to advocate for others, listen to others and work to make CF no longer stand for cystic fibrosis, but rather Cure Found.
May is National Cystic Fibrosis Awareness Month.