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Tag Archives: NIH

Jessi D., Adrenalectomy

Before treatment

Before treatment

I was diagnosed with Cushing’s syndrome when I was 17-years-old. For 5 years I went to many different doctors and they couldn’t diagnose my symptoms: weight gain, high blood pressure, thin hair, depression and irregular periods. When I was 17 my mother decided to bring me to a Traditional Chinese Medicine doctor in New Jersey. After only a few visits, he determined that I had an adrenal disease. I took all of the information he gave me and brought it to an endocrinologist. She gave me blood tests, which showed that I had high levels of cortisol. I told her the TCM doctor diagnosed me with an adrenal disease and she said I might have Cushing’s syndrome. Luckily, my endocrinologist just learned about Cushing’s syndrome at a seminar, a few weeks before my appointment with her.

My endocrinologist connected me with doctors at the National Institute of Health (NIH) in Washington D.C. They invited me to stay there for a week to get tested for Cushing’s syndrome. If the tests were positive, I could be a part of their Cushing’s syndrome protocol. My blood tests showed high levels of cortisol and my CAT scans revealed a benign tumor on my left adrenal gland. The tumor was producing the excess cortisol in my body. The doctors at NIH are studying Cushing’s syndrome in order to discover what causes it. They told me I could have surgery there and then they would use my tumor and medical history as a part of their study. I returned a few months later (during my senior year of high school) to have surgery at NIH. They removed my left adrenal gland with the tumor on it. I was in recovery for two weeks as an inpatient and for a few more weeks at home.

I took hydrocortisone supplements for one year after the surgery. Then my right adrenal gland became sufficient enough to produce cortisol on its own. During my first year after recovery I returned back to my true self, physically and mentally. I lost 100 pounds, my blood pressure was lower, my hair grew back thicker, my hormones were balanced so I wasn’t depressed and my periods were regular again. I feel grateful to have experienced this journey with Cushing’s syndrome. I learned a lot about myself and my friends and family. Currently, I’m volunteering with the Cushing’s Support & Research Foundation. I support and communicate with new members who have Cushing’s syndrome. When I had Cushing’s syndrome I felt lonely at times because I didn’t know anyone who could relate to me at this level. I love being able to provide diagnosed people with meaningful support. I also love my new appreciation for life that I gained from my experience with Cushing’s syndrome.

After treatment

After treatment

I’m 21-years-old now and I’m working and going to school for a degree in Social Work. I volunteer with hospice and Chevra Kadisha, which is an organization that prepares the deceased for burial. I’m also volunteering with children in Dharamsala, India this summer. My boyfriend and I recently started a New Jersey chapter of a global meditation network called Meditation Flash Mob (www.medmob.org). So far there are over 20 MedMob chapters around the world. We host meditations in public places to show that people from any walk of life can meditate. We also started a New Jersey chapter of a global network called Evolver (www.evolver.net), which has about 40 chapters worldwide. Evolver is a social network for conscious collaboration. It provides a platform for individuals, communities, and organizations to discover and share new tools and ideas that will improve our lives and change the world. I’m looking forward to opening my heart in new ways and creating a more vibrant sense of community.

Member: 111638
Newsletter: Spring, 2011 
State: New Jersey

Kandis M., Transsphenoidal Pituitary Surgery, Bilateral Adrenalectomy

Never in a million years would I have dreamed I’d be writing a letter like this. All of my life I’d been an active, athletic girl who loved sports, working out, and being physically active. I was a big runner all throughout high school and never had a problem with my weight. In fact, if anything, I was probably too small and people would comment on how “tiny” I was. I was almost 5’4″ and weighed between 110-115 pounds at most. I could eat anything I wanted, never had to worry about dieting, and exercised only because I wanted to, not because I had to.Continue Reading