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This is a small glimpse into my life and my struggle with Cushing’s. I was diagnosed with Cushing’s syndrome when I was 13 y.o. We were in India at the time and there was very little known about Cushing’s or even the appropriate course of treatment for such a disease. The most important decision that my parents felt that they had to make at the time was to immediately cure their child of this disease; and that is what they did. The doctors quickly ran through the battery of tests to confirm the pituitary tumor, its precise location, scheduled an appointment with a neurosurgeon and even before I could even comprehend anything, I was in the recovery room after my first transsphenoidal surgery.
A year after my surgery, I had still not lost any significant weight nor had the symptoms of Cushing’s subsided. I had a follow-up appointment with my surgeon and he recommended a second surgery. I was devastated with the prognosis and having gone through it once already, I was terrified of the prospect of going under the knife yet again under no certain terms of any recovery. This is probably one of the most difficult periods in my life that I can remember as I had to make a decision, one that would affect the rest of my life. I had to decide whether I would want to undergo a second surgery. I had questions like “why me?” or “what had I done wrong?” to which there were no answers.
My endocrinologist in India had just returned from the United States after completing his PhD dissertation. He was the first to suggest that we take the time and invest our resources to find a more suitable hospital outside India that may have more experience with Cushing’s. Upon his suggestion, my mother spent countless hours scouring the newly available World Wide Web at the few internet cafes in Bombay to understand Cushing’s as well as find resources that may guide us to a hospital or doctor who may have had experience in dealing with Cushing’s. Fortunately our efforts bore fruit as my endocrinologist was able to locate an active research study at the National Institutes of Health (NIH) in Cushing’s. We quickly sent all of my paperwork and lab test results to the NIH in hopes to be accepted as a participant in their study. Our prayers were answered.
When I first came to the NIH, I was scared of what was going to happen, however, the doctors and nurses there went above and beyond to make sure that I was as comfortable as can be. The sequence of steps, including the surgery, as well as the possibility that I may not be fully cured due to the invading nature of the tumor, was explained very clearly to me. I had my second transsphenoidal surgery at the NIH. The tumor could not be completely excised and it was recommended I undergo a full 28 doses of radiation therapy to prevent any further re-growth.
Today, as I write this article, I am still amazed at what I endured as a child and the hardships that I faced while dealing with my illness. I know that I am not defined by my disease rather am strengthened by it. I have always looked to my past to find the courage and resilience in order to face any obstacle.
I obtained my bachelors in electrical engineering from the University of Illinois-Urbana Champaign. Upon completing my engineering, I knew that my calling was elsewhere and in pursuit of that I started taking pre-med courses and started preparing for my Medical College Admission Test (MCAT).
Currently, I am pursuing my doctorate of medicine (MD) at Wayne State University School of Medicine. All of this cannot be the efforts of just one individual but a culmination of support and encouragement from so many. In my life, I have had remarkable friends, support of my family most especially my mother who has always been there for me when I was in the hospital or helping me with school or even being there for me when I thought it was impossible to move forward. Cushing’s has been a journey for me and I can honestly say that I am better for it.
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