It’s my birthday, Sunday, September 16. I celebrate each year with friends and family, and have a little tradition of buying myself a gift, something special just for me. This year all I want for my birthday, and every day, is good health for everyone and especially my four-year-old granddaughter.
She was diagnosed with Cushing’s Disease in February 2018 following five months of extensive blood, saliva, and urine tests and a sedated MRI, which revealed a pituitary macroadenoma (tumor).
Cushing’s disease is a cortisol disorder due to a tumor on the pituitary gland. A pituitary macroadenoma is a benign tumor at the base of the brain. It discharges adrenocorticotropic hormone (ACTH), stimulating the adrenal glands to produce too much cortisol. This hormone (cortisol) is normally made by the adrenal glands and supports life itself. It enables all of us to fight illness and impacts all body tissues. However, cortisol spikes wreak havoc on the entire body and are most frightening and dangerous.
According to the UCLA Pituitary Tumor Program (pituitary.ucla.edu/cushings-disease), “Cushing’s disease is rare, affecting 10 to 15 people per million each year, most commonly adults between 20 and 50 years of age. Women account for more than 70 percent of cases. Most patients with Cushing’s disease have small tumors (pituitary microadenomas).”
The Mayo Clinic (https://www.mayoclinic.org/diseases…/cushing-syndrome/symptoms…/syc-20351310) lists symptoms as rapid and extreme “weight gain and fatty tissue deposits, particularly around the midsection and upper back, in the face (moon or ‘Cushie’ face), and between the shoulders (buffalo hump), pink or purple stretch marks (striae) on the skin of the abdomen, thighs, breasts and arms, and thinning, fragile skin that bruises easily.”
This is a very rare disease and particularly rare in four-year-olds. Connecting with the most experienced team working with very young children to treat her illness has involved multiple out-of-state trips and consultations. We have most recently been referred to a team in New York City which is hopefully the right place with the right medical team.
My gift to myself, and to you, on this birthday is to learn everything I can to educate everyone about Cushing’s Disease. Our path has been difficult and long without a guiding light organization to help people find the medical help they need. My birthday wish is that through bringing attention to Cushing’s, more pediatricians and medical professionals will recognize and properly diagnose and treat the illness so that fewer people of all ages will suffer through years of searching for solutions.
https://www.facebook.com/Amazing-Amelia-Cushings-Disease-Journey-220476942139461/
https://www.facebook.com/donate/193052884894073/10217483157696775/
https://www.cafepress.com/amazingameliacushingsdiseaseawarenes