Cushing’s Awareness Day on April 8 Spotlights Patient Journeys
Cushing’s Awareness Day is April 8th — a day set aside each year to call attention to the rare disorder and the more than 6 million people who are diagnosed annually with Cushing’s disease.
The day also is the birthday of Harvey Cushing, widely known as the father of neurosurgery, who first described the disease some 90 years ago. Cushing’s disease occurs when a tumor in the brain’s pituitary gland releases large amounts of adrenocorticotropic hormone, resulting in excessive cortisol production.
The disorder causes a range of physical, mental, and hormonal problems, but is not well known.
“Leading up to April 8th, we are committed to raising awareness and education of Cushing’s Disease, a rare condition named after Harvey Cushing, an American neurosurgeon, who described the first patients with this condition in 1932,” biopharmaceutical company Recordati Rare Diseases states in a #CushingsAwarenessDay social media post.
Recordati markets several Cushing’s treatments, including Isturisa (osilodrostat) and Signifor (pasireotide).
To mark the day, Recordati is offering resources for patients and caregivers, including information on the difference between Cushing’s disease and Cushing’s syndrome, and the symptoms of each.
Other resources on offer are suggested strategies for coping, statistics about the disorder, and tips on how to find an endocrinologist. Information on the role of cortisol in Cushing’s, common causes of the disorders, and issues regarding diagnosis also is available.
For its part, the Australian Pituitary Foundation is offering a Cushing’s Awareness webinar on April 9. Jack Forrest, a Cushing’s patient, will discuss his journey to diagnosis and treatment. The webinar also will feature an endocrinologist, radiation oncologist, and endocrine surgeon. A question-and-answer period will follow the presentations.
To register, send an email to [email protected]. Along with the webinar link, registrants will receive instructions for submitting panel questions.
In the U.K., the Pituitary Foundation is observing Awareness Day by presenting patient stories. Minal, one of the featured patients, said it wasn’t until March 2021 that she was “finally” diagnosed with Cushing’s syndrome — despite symptoms that began in 2017. She suspected the diagnosis after recalling distinct images from a lecture about the disorder she attended during her second year of training to become a dentist. Those images included the “moon face” she had been developing.
“Her story is similar to many Cushing’s patients, so she is sharing her story to raise awareness in the hope that people will be able to get a quicker diagnosis,” the organization states in its presentation.
Minal’s earliest symptoms included an irregular menstrual cycle, later followed by difficulty breathing and severe chest tightness when running. She also had noticed a small bulge growing on her lower abdomen and increased hair growth around her upper back and lower face. In addition, her hair had begun thinning and falling out.
At length, after suspecting thyroid issues, Minal developed high cholesterol, a round and puffy face, purple stretch marks and bruises on her body, stomach bloat, and weight gain.
“I must have gone to my GP [general practitioner] seven or eight times in the space of six months, complaining about various symptoms, although on numerous occasions I was simply told I was paranoid and anxious and these complaints were common from girls my age,” she said.
“Every time I wanted to approach my doctor I felt embarrassed and anxious as I thought they would think I was crazy,” she added.
Her advice to others is to keep fighting until there’s a diagnosis that feels right.
“You know yourself best and you know when something doesn’t feel right, so trust your own judgment and don’t give up, be persistent,” she said.
Ultimately, Minal was diagnosed with Cushing’s syndrome caused by an adrenal adenoma — a tumor in the adrenal glands, which sit atop the kidneys and are responsible for cortisol production. She began her road to recovery following an adrenalectomy, or adrenal gland removal surgery, and with medications to control her cortisol levels, all while balancing her work as a dentist.
Cushing’s Awareness Day targets lawmakers, scientists, health professionals, and industry representatives, in addition to the general public.