Addison’s disease: Chase’s story

“He is outside all the time with his friends,” says his mother, Natalie. “He walks or rides his bike to the pool up the street. He is so different, it is like night and day.”

Since life-changing diagnosis and treatment for Addison’s disease at the Adrenal and Puberty Center at Children’s Hospital of Philadelphia (CHOP) four years ago, Chase says he now dreams of becoming a football coach like Andy Reid of the Kansas City Chiefs. Before CHOP specialists prescribed his daily routine of steroid medication, Chase says he was often too weak to get off the couch.

“I never thought I would be playing baseball and flag football with friends behind my house,” Chase says. “Honestly, I didn’t know my life would be changed forever. Before coming to CHOP, I just didn’t have the energy for anything.”

Adrenal insufficiency

The hormones cortisol and aldosterone are produced by the adrenal glands. When these are damaged or don’t function properly, the body cannot produce these hormones, which are necessary to help respond to illness, manage blood pressure, blood sugar and other vital functions. This condition of adrenal insufficiency, also known as Addison’s disease, is rare, incurable and can be managed by routine doses of medication.

Symptoms of children with adrenal insufficiency include slow weight gain, fatigue, weakness, low blood pressure, craving for salty foods, vomiting and more. Low levels of cortisol can also result in overproduction of melanin, which can cause darkening of the skin.

Low energy, baffling symptoms and adrenal crisis

Before coming to CHOP from his home in York, Pa., Chase experienced all these baffling symptoms. He remained small and thin for his age, despite a huge appetite for salty junk food. Even though he spent most of his time indoors, the tint of his skin grew to a dark tan. He vomited, sometimes for no apparent reason.

A spring 2019 family trip to see the Statue of Liberty in New York City at age 11 was cut short when Chase, “was so tired he could not even walk out of the train station,” his mother says. While pushing the cart at Sam’s Club that summer, Chase collapsed and his lips turned blue. He drifted in and out of consciousness. After he was rushed to a nearby hospital, the local medical team suspected Chase was in adrenal crisis, gave him steroids and airlifted him to CHOP for diagnosis and expert specialty care.

CHOP Adrenal and Puberty Center’s experts help

After being admitted to CHOP, Chase met Maria G. Vogiatzi, MD, Medical Director of the Adrenal and Puberty Center and an attending physician in the Division of Endocrinology.  

With one glance at Chase’s coloring, Dr. Vogiatzi she suspected adrenal insufficiency. Blood tests confirmed the condition. Luckily, it is treatable with medication and close monitoring for extra doses during times of stress or illness.

“Once this was diagnosed, the light bulb went on. Within a day or so, CHOP helped Chase out of a bad situation,” his father, Rick, says.  “He can live a normal life for the most part. He just has to take a few pills each day.”

Dr. Vogiatzi’s swift diagnosis and reassurance during regular checkups since then has transformed Chase’s life, his mom says.

“We could not believe it. Before CHOP, sports were not even a thought in his head. He just didn’t have the energy for it,” she says. “At CHOP, we had such a good experience out of a bad situation.”

Self-managing his daily care

Once lagging in school, Chase is now on the honor roll. He’s built up his strength by lifting weights at the gym. He manages his own daily doses of medication, even during sleepovers away from home. Through visits with Dr. Vogiatzi, Chase has gained the confidence to monitor his energy and take extra medication when he needs it.

“The biggest thing Dr. V does is reassure him that he is OK as long as he takes his pills,” his mother says.

“He is getting taller. He has gained weight, and he is on a normal growth path. With how they diagnosed him immediately and all the follow-up care, CHOP did the best things for us.”