Supporters set for Cushing’s Awareness Day on April 8

Participants are poised for Cushing’s Awareness Day, observed every April 8, to call attention to Cushing’s disease, a disorder that causes a host of physical, mental, and hormonal issues.

The day also marks the birthday of Harvey Cushing, widely considered the father of neurosurgery, who first described Cushing’s disease some 90 years ago.

Cushing’s disease occurs when a tumor in the brain’s pituitary gland leads to the production and release of large amounts of adrenocorticotropic hormone, causing excessive cortisol production. It falls under the umbrella of Cushing’s syndrome — a set of disorders characterized by elevated cortisol levels.

“We are encouraged by so many Cushing’s patients who are proactive in their own lives, supportive of others, and engaged in research and other projects that lead to better outcomes for all of us,” the Cushing’s Support & Research Foundation (CSRF) states on an awareness day webpage. “We are here to support all Cushing’s patients at all points in the process to diagnosis, through treatment, and to the ‘new normal’ on the other side.”

The foundation is offering ways people with Cushing’s can join in this year’s observance, including by posting on social media essays of 500 words or less detailing their journey, creating and posting collages or individual photos depicting their experiences with Cushing’s, and hosting a Facebook fundraiser to support the CSRF.

Although there are no strict rules, the organization encourages participants to kickstart their fundraiser before April 8 — and to hold it until April 15, a week after the observance. The fund amount goal should be set to $154, according to the foundation.

The organization also is seeking submissions of photos that showcase Cushing’s symptoms, such as bruising or a so-called moon face. Patients may choose to submit a “before” photo of themselves taken while experiencing Cushing’s symptoms, along with one showing how they look once symptoms subside.

A published before-and-after photo entry by Gretchen includes a personal narrative.

“I am rare … and a HERO to myself. I was able to endure, push for diagnosis and recover from the hardest battle I’ve ever had to fight with Cushing’s disease,” she wrote.

“I never gave up with doctors, started a new career and set new goals in my life. I’ve learned from my experience and now have more endurance, positivity, health and motivation to help others also experiencing this journey. The list of issues that I’ve overcome is too long, but I’m excited for everything that is still ahead of me in life!” she said.

Another patient, Sonia, submitted photos of her before diagnosis, and after. In the latter set, she describes herself as having thin and unmanageable hair, being easily bruised, having experienced weight gain, and possessing a “buffalo hump” — an accumulation of fat on the neck and upper back that can occur with excessive cortisol production.

“I used to sleep like a baby, but I started to wake up in the middle of the night, they told me it was aging, I was 43,” Sonia stated. “I had a stress fracture while running, I had osteopenia, and they thought my kidneys were not working properly. I was gaining weight even if I didn’t change my eating and activity habits. I was my own advocate and was diagnosed with Cushing disease.”

Awareness day targets the general public as well as legislators, researchers, industry representatives, and health professionals.