Families Push For Education, Normalcy for Kids with Adrenal Insufficiency

When Ryan Crowley was in first grade, he got a cold, like many young children do.

But Ryan didn’t quickly bounce back. Instead, he kept losing weight, said his mom, Julia Crowley.

“I knew something was wrong. My gut feeling was telling me,” Crowley said. “I just kept going back, and I persisted.”

Doctors noticed a problem with one of Ryan’s eyes, and initially suspected a brain tumor. After a battery of tests, nearly two years and consultations with doctors in two states, Ryan had his diagnosis.

They learned what Ryan really was dealing with was not a brain tumor, but rather adrenal insufficiency, which can be caused by numerous different conditions. In Ryan’s case, optic nerve hypoplasia, underdevelopment of the optic nerve, was at the root of his adrenal insufficiency.

In most ways, Ryan is just like other kids. He looks like an average 12-year-old and he goes to school, plays sports and lives life like everyone else, said his mom.

Adrenal insufficiency is the inability for a body to make enough cortisol. Cortisol is the stress hormone needed when the body is experiencing a great amount of stress such as illness and injury. It also helps regulate other body systems and is important for survival.

Though Ryan now appears to be in an unexpected remission, while he was sick he needed to have his medication close at hand in case he broke a bone or had another shock to his system because that could be life threatening for someone with adrenal insufficiency.

Many others with adrenal insufficiency have no expectation of remission. Rather, for many AI is a part of their daily lives, requiring medication every day, as well as emergency injections if something happens that requires extra cortisol in the body. Without the proper treatment and medication, they could die.

The Crowleys learned what many other families, including at least a couple others in Eugene, have learned through their experiences with this rare condition.

Adrenal insufficiency is considered rare. And, it is not familiar to everyone in the medical community. Also, its symptoms can sometimes mimic other problems. This can lead to getting the wrong treatment, which can be dangerous and even fatal for someone in adrenal crisis.

For those reasons, Jennifer Knapp, another Eugene mom who has a child who lives with adrenal insufficiency, quit her job and spent her spring lobbying the state Legislature in an effort to pass two bills that would raise awareness about adrenal insufficiency and provide some safety nets for children and adults who have this condition.

Knapp, who co-founded Adrenal Insufficiency United in recent years, was successful in her quest. The bills will take effect in January.

Senate Bill 874 “requires Oregon Health Authority to disseminate information to health care professionals and public related to adrenal insufficiency.”

Senate Bill 875 “requires State Board of Education to adopt rules under which school personnel may administer medications that treat adrenal insufficiency to students experiencing adrenal crisis.”

Both were sponsored by Sen. Floyd Prozanski (D-Eugne) at the request of Knapp, who chased him down a few years ago at the Eugene Celebration to plead her case.

“Every person has the right to live their life as fully as they can,” Knapp said. “There’s so many rare conditions that cause adrenal insufficiency and there’s so many other rare conditions that people are living with and they deserve the same chance as everyone else.”

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