April is Cushing’s Disease Awareness Month with April 8 designated particularly as Cushing’s Disease Awareness Day to honor Dr. Harvey Cushing whose birthday was on that day.
Dr. Cushing’s name is commonly associated with his most famous discovery, Cushing’s disease. In 1912, he reported an endocrine syndrome caused by a malfunction of the pituitary gland which he termed “polyglandular syndrome.”
Many people wonder why Cushing’s awareness is so necessary. They say, “I’ve never heard of the disease. How it could be so important? Why does it have its own awareness day? Surely, I would have heard about such a disease if it were this serious.”
It is a real disease that severely affects many aspects of health, so 18 years ago I joined my fellow advocates Bob Knutzen, founder of the Pituitary Network Association, Mary O’Connor, founder of Cushing’s Help, and Louise Pace, founder of Cushing’s Support & Research Foundation to help raise public awareness about this debilitating illness. It is so misunderstood by most medical professionals that their patients often suffer for many years without a correct diagnosis and in far too many cases, never get a diagnosis at all.
Students who would enter in to the field of endocrine, tread with caution, best be wary of the gland pituitary. Quartered squarely in the head of the pit, it can be said, as a metabolic proctor, it outsmarts the smartest doctor.
– The New England Journal of Medicine
While personally suffering from a laundry list of common Cushing’s disease symptoms I sought help from numerous medical professionals and over and over I was told there was nothing medically wrong with me. I gained over 100 pounds due to the tiny tumor in my pituitary gland which was overproducing the hormone ACTH, causing a secondary disease of Cushing’s.
Besides the rapid weight gain, I lost most of my hair and had a persistent ugly red rash all over my face, back and neck. I needed blood pressure and anxiety medications. I couldn’t sleep and I paced the floors night after night because of debilitating waves of nervousness pulsing through my veins. Eventually I could barely walk up or down stairs, and yet, uninformed doctors had insisted my health problems were due to lack of a healthy diet and exercise. No matter what I ate, how much I worked out, how many times I went to a doctor begging for help, how much I tried to explain that I was not doing this to myself, no one believed me.
After seven years and not sure that I would live another 6 months, in March 2000 I finally met my team of heroes, Dr. Pejman Cohan, my endocrinologist and Dr. Daniel Kelly, my neurosurgeon, who literally helped give me my life back. I say, helped, because removing the tumor and regulating my hormones after surgery and during my recovery over the months following surgery was imperative to my quality of life. I love these doctors so much, for not only their brilliant expertise, but also their compassion for my quality of life, which was extraordinary.
Equally important though was that I had to help myself get my life back. So where to start rebuilding my life after my successful pituitary surgery? I didn’t have a clue. But one thing was for sure, I wanted to educate our medical community so that no one would have to experience what I’d been through.
Since my surgery April 14, 2000, I have had the honor to work with my heroes Dr. Cohan and Dr. Kelly, and together we’ve help make a difference for so many other Cushing’s patients. Pacific Neuroscience Institute’s Pituitary Disorders Patient Support Group is the longest running group of its kind in the country.
The root cause of many hormonal imbalances is a small pea-size gland, the pituitary, sitting at the base of the brain, which often houses the tiniest of tumors. A single pituitary tumor has the capability to completely disrupt the normal function of the entire endocrine system, mystifying most doctors and threatening the health and even lives of millions of men and women of all ages and races.
– Daniel F. Kelly, MD
I write this blog, in the hope that we will not only raise awareness for Cushing’s disease but also practice compassion for others. Shortly after my surgery I started doing a lot of media work and eventually I felt pieces of my life start to make sense. Just like a news story, my health had been kidnapped. The person I knew I was, the person I’d always been, was being held hostage in a grossly obese, unhealthy body; my personal control had been taken away and some sort of medical condition had taken over.
Many would say, “Oh my doctor would have diagnosed you, they are really smart.” Even though I had gone to see top doctors across the state at top medical centers, they had refused to cast a broader net, not because they weren’t smart, but because they were uneducated about hormonal disorders. Don’t judge people. You most likely don’t have the whole story. Strive to take good care of your health and find doctors who listen. If they don’t have the answers then find someone who does. Thankfully now potential Cushing’s disease patients have access to the internet and resources that can help them get a diagnosis from a knowledgeable doctor.
I know firsthand how lonely and debilitating undiagnosed Cushing’s disease is. That’s why I’m so passionate about doing whatever it takes to educate our medical community and raise public awareness. Getting to play an important part in making a difference for other patients has turned one of the darkest parts of my life into the best part of my life.
Sharmyn, I wrote you a long time ago – I can’t even remember how long – and my pituitary surgery was in 2010. I saw your episode on Mystery Diagnosis and was in total shock. You were telling my exact story. I remember like it was yesterday, it brings tears to my eyes. I sat on the edge of my seat the entire show with my jaw on the floor. I was in utter disbelief! It is YOU that gave me the courage, strength, and perseverance to prove to the doctors that indeed I had Cushing’s disease. It took about 6 years of persistence but I never gave up. I wanted to so many times and it was very difficult but I fought through and I honestly can’t thank you enough. You saved my life and for that I am FOREVER GRATEFUL!
Thank you again, I sincerely appreciate it.
– Holly, Cushing’s disease patient
I’m extremely proud that when I met Dr. Kelly 18 years ago, he had the same vision as I did and he has continued to educate his colleagues and improve surgical techniques to help pituitary patients. The Pacific Neuroscience Institute’s Pituitary Disorders Center is made up of the team of neuro-endocrine experts I dreamt of when I started advocating so many years ago. I’m grateful every day to Dr. Kelly and Dr. Cohan for caring about me and seeing the work we do together is so valuable. It changes the way patients are treated with a pituitary tumor and we will continue to educate and raise awareness until everyone understands the relationship between the hormones produced by the pituitary gland produce and our quality of life.
I’d like this year to be in memory of my dear sweet friend Lisa, whose prolonged diagnosis of Cushing’s disease took her life.
Cushing’s Disease 101: Not rare but perhaps rarely diagnosed…
Sharmyn McGraw is a patient advocate, charismatic professional speaker and published author. She has first-hand experience as a Cushing’s disease survivor and often collaborates with nationally-recognized neuro-endocrine experts, sharing the speaker’s platform while educating patients and doctors about neuroendocrine hormonal disorders and their impact on our health as a nation. Sharmyn facilitates the largest pituitary patient support group in the country for the Pacific Neuroscience Institute.