Rare diseases can impact many aspects of life, whether that is physical, psychological, educational, or something else. As caregivers are some of the closest people to those with rare diseases, they are often the best equipped to observe and detail how these conditions influence quality of life (QOL).

Colette Romero, whose son lives with eosinophilic esophagitis (EoE), is the perfect example. She watches her son as he goes through life and makes sure to advocate for him based on what she sees. Recently, the American Journal of Managed Care (AJMC) asked Colette in what ways EoE impacts her son’s QOL.

EoE’s Impact on Quality of Life

The AJMC asked Colette about her son’s life with EoE, acknowledging that it has a large impact on his diet, but wanting to know more about the other effects. In her response, she talks about three different facets of life: physical, mental, and treatment.

Physical Impacts

As you could imagine, there are symptoms that Colette’s son handles due to his condition, but there are additional physical implications beyond these symptoms. For example, he has to attend many doctor’s appointments, all of which take a physical toll on him. Sometimes he has to undergo an upper endoscopy, which requires anesthesia and planning, not to mention the anxiety it brings to him and his family.

Then, Colette moved to explain the nutritional aspects of EoE and how those impact her son. Malnutrition is often a problem, which then causes issues due to a lack of energy. On top of this, he handles anemia, iron-intolerance, and asthma. Because of this, it is often difficult for him to participate in normal childhood activities like running, swimming, and playing with friends.

Mental Impacts

Colette’s son’s body is not the only thing impacted by EoE. He often feels separated from his peers, as he can’t always do the same things as them. School lunch with friends isn’t an option for him; he has to sit at a table designated for him because of his food allergies. He can’t eat the same foods as his friends at birthday parties or play dates. In the end, he just feels different from the rest of the kids his age and wants to fit in.

Anxiety is another psychological impact brought on by EoE. Medical appointments, symptoms, and the other impacts of his condition can all lead to anxiety, which brings its own impact on QOL.

Impact of Treatment

Colette’s son has had to do a lot of work on his own time to overcome the obstacles placed in front of him. He’s also had help from treatment, which has had its own impact on his life.

Starting before he even went to kindergarten, doctors were recommending treatments that would have a large effect on his life, such as a feeding tube. This suggestion was made to overcome the low weight he was experiencing.

Instead of this option, Colette opted for an inpatient program at the Children’s Hospital of Orange County. When her son was five years old, he spent a month in the hospital participating in a comprehensive interdisciplinary program. This meant social workers, nurses, doctors, speech pathologists, occupational therapists, and more, all working to help Colette’s son. Not only did this team care for her son, but they taught Colette what she’d need to know in order to give him the best care upon leaving.

Since then, they’ve been able to figure out a plan that keeps Colette’s son healthy and without a feeding tube. She notes that it is not only this team of medical professionals and other specialists who made this happen, but the determination of her son as well.

About EoE

Eosinophilic esophagitis (EoE) is a digestive system disorder in which there are high levels of eosinophils in the esophagus. High amounts of these white blood cells typically accumulate when one is exposed to an allergen. Medical professionals have also found that some affected individuals have a high expression of the eotaxin-3 gene, so there may be a genetic component to this condition as well. Regardless of the cause, symptoms include difficulty swallowing, malnutrition, a poor appetite, nausea, vomiting, stomach pain, poor growth, weight loss, and food getting stuck in the throat. In terms of treatment, a change in diet has been proven to greatly improve symptoms. Doctors advise that patients avoid milk, fish, eggs, nuts, soy, and wheat. If one has a very severe case, they may need a liquid diet or steroids to reduce inflammation.