Preston-Eosinophilic Colitis

Preston has spent all of his 15 years of life living in beautiful Utah with his two older sisters and one older brother. Preston has Eosinophilic Colitis, one of a family of rare, chronic, inflammatory diseases in which patient’s similar to Preston experiences poor growth, malnutrition, severe abdominal pain, extreme fatigue, along with nausea and headaches. An eosinophil is a type of white blood cell associated with allergies, parasites, and cancers.Preston-Eosinophilic ColitisAn individual diagnosed with eosinophilic colitis has a high number of eosinophils present in the large intestine, causing inflammation and damage, without the presence of parasites or cancers.Preston-Eosinophilic Colitis  For most patients, food is the trigger of the disease causing eosinophils to react to food as if it were something to fight. At this point, Preston’s disease is triggered by too many foods to identify, making treatment very difficult. Food allergies and anaphylaxis add to the difficulty of treating Preston and resolving his symptoms.Preston-Eosinophilic ColitisPreston-Eosinophilic ColitisRegular colonoscopies and endoscopies are currently the only way to diagnose and monitor eosinophilic colitis and Preston has been through many procedures since his infancy. Currently there is no consensus guideline for the treatment of eosinophilic colitis.Preston-Eosinophilic ColitisDisease treatment usually includes diet management and medication. Preston is currently receiving 100% of his nutrition through a nasogastric tube (NG tube) using a specialized amino acid formula, which removes all proteins from his diet. This treatment is usually reserved for patients who do not respond to other treatment options. It can be very expensive (equivalent to a monthly house payment) and is not a covered benefit by many insurance carriers in Utah.Preston-Eosinophilic ColitisPreston-Eosinophilic ColitisPreston states that his greatest struggle is the way our society focuses on food. Something as simple as eating lunch at school, grabbing a treat with a friend, having dinner with the family, or celebrating a birthday or holiday provokes anxiety and stress. Preston struggles being around the smell of food or seeing food that he cannot eat for fear of triggering a disease reaction. Food is everywhere, which means temptations are everywhere. Not being able to participate in school, community, or church functions where food is present is very difficult, both socially and mentally. Preston does his best to have a positive attitude and focus on other means of socializing.Preston-Eosinophilic ColitisPreston is currently studying to obtain his Falconry license with plans to get an American Kestrel and eventually a Red-tailed Hawk. He loves to volunteer his time at bird and reptile education shows and natural history museums with his oldest sister. Preston loves anything science related and loves to read non-fiction books.Preston-Eosinophilic ColitisPreston-Eosinophilic ColitisPreston and his family would love to see a clinic in Utah that specializes in eosinophilic gastrointestinal diseases (EGIDs), similar to clinics in other states across the country. A specialty clinic in Utah would offer state-of-the art and multidisciplinary care to patients and their families affected by eosinophilic gastrointestinal diseases. Support, education, advocacy, and highly qualified physicians are key to the success of patients and families living with EGIDs.Preston-Eosinophilic ColitisPreston-Eosinophilic Colitis

About the author

Gina

Gina began working tirelessly as an advocate for the rare and undiagnosed diseases community several years ago after her and her family moved to Utah. She is the Co-founder and Executive Director of the Rare and Undiagnosed Network (RUN), Chair of Utah Rare, and Utah Ambassador for National Organization on Rare Diseases (NORD).

Gina is currently undiagnosed and the mother of three children with an undiagnosed genetic dysfunction. She is advocating for clinical whole genome sequencing covered by insurance companies and hopes to help rare and undiagnosed families emotionally and financially.

2 Comments

  • Thanks for writing this article and thanks to Preston for sharing your story. Our little boy has EC and this was very encouraging to read. I’m so glad EC is getting some attention.

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