Who would think the best day in my life was when I was told I had a rare disease that required brain surgery?
Cushing’s disease is now estimated to occur in 10-15 per million people worldwide. Like most patients, it took years to be properly diagnosed. Our symptoms, while distinctive of Cushing’s, are often treated by several specialists.
From 2009 through 2012, Cushing’s caused me to have multiple bouts of pneumonia, bronchitis, strep, and shingles, a fractured hip, fragile skin, chronic wounds, inability to sleep, painful joints, no menstrual cycle (which meant no second child), cognitive difficulties, muscle atrophy, and severe weight gain. I went from a size 6/8 to a size 16/18 even while dieting and exercising daily. I had a moon face and a buffalo hump.
Whatever was going on inside was slowly taking away my ability to be a mother, a wife, a daughter, a sister, and a friend. It took away my sanity because I knew I was sick, but every test and every doctor said I wasn’t. It took away my confidence. It literally made me a different person – I was often unrecognizable to others.
In June 2012, I was finally diagnosed with Cushing’s disease. My journey has taken me in and out of the hospital more than 40 times. An unsuccessful transsphenoidal surgery led to the removal of my adrenal glands (adrenal insufficiency), diabetes insipidus for four years, a right lung lower lobe wedge resection, an umbilical hernia repair, a PDD diagnosis that led to a total hysterectomy with bilateral salpingo-oophorectomy, a ‘miscommunicating’ hypothalamus, and lymphedema in my lower extremities.
While this is my personal story, most Cushing’s patients can share similar tales.
From the beginning, I promised that if I got through this, I would do whatever I could to help patients and their families because there was so little help for me and mine. In 2014, The Conley Cushing’s Disease Fund was created.
I self-published a book, “A Cushing’s Collection,” that contained my emails to family and friends during this journey, so there was something out in the universe for people who were diagnosed with this disease to read.
Funds raised through an annual “Kickin’ Cushing’s to the Curb” event support early diagnosis medical trainings through grand rounds, CME classes, and “lunch and learns” for an estimated 507 medical students and professionals to date. We have an active support group with patients and their families that gather periodically throughout the year.
Now, the best day of my life is every day. This disease taught me what is important in life and to appreciate every good day you are given.