The EPIC Foundation would like to recognize Mary Kelly O’Connor as a pioneer in the Cushing’s community as an advocate and life changer! Mary Kelly O’Connor is Person of the Month for May, 2018!
Mary Kelly O’Connor is the founder of Cushing’s Help and has been providing support to the Cushing’s community for almost 20 years! Mary’s life changed in 1983! She began noticing several weird symptoms. The first symptom she noticed was an abrupt cessation of her menstrual period. Her gynecologist confirmed that she was not pregnant but had no good explanation for why this was happening. Then she began experiencing extreme fatigue which required her to take frequent naps throughout the day.
Many weird and seemingly random symptoms began appearing. Mary grew a beard (Hirsutism), gained weight even though she was on Weight Watchers and working out at the gym nearly every day, developed chronic pain, developed what is called a “moon face” and a “buffalo hump” on the back of her neck, and developed stretch marks. Mary also developed mood symptoms including depression.
Mary eventually came across a little article in the Ladies Home Journal magazine that said “If you have these symptoms…ask your doctor about Cushing’s”. After that, Mary began assertively seeking answers. However, doctors would say that Cushing’s Disease is too rare and that there was no possible way that she had it!
In 1986, Mary developed a symptom that really caught her husband’s attention-she began bruising very easily and bleeding under her skin. Fortunately, the Hematologist/Oncologist ran a twenty-four hour urine test and really looked into a possibility of Cushing’s. Mary was referred to an endocrinologist who ran further tests.
The endocrinologist confirmed Cushing’s but ultimately Mary O was referred to NIH (National Institutes of Health). NIH was doing a clinical trial of Cushing’s. While she was at NIH, Mary O was gaining about a pound a day! Adrenal Cushing’s was ruled out so they knew that the tumor, which was the culprit, was in the pituitary.
The MRI was not able to locate the tumor which is typical with Cushing’s pituitary tumors. The next step was an Inferior Petrosal Sinus Sampling Test, IPSS. Ultimately, this test did show where her tumor was located.
On November 3, 1987, the surgeon, Dr. Ed Oldfield, performed the brain surgery to treat Mary O’s Cushing’s Disease. Mary O achieved remission from Cushing’s and she gets tested regularly to confirm that she has sustained remission.
Because of Mary O’s experience of being sick and the difficulty in finding help and a diagnosis, she decided to create a safe space to support others and to increase awareness. The first website (http://www.cushings-help.com) went “live” July 21, 2000. It was just a single page of information. The message boards began September 30, 2000 with a simple message board which then expanded. Today, in 2017, they have thousands of members!
Mary O is the pioneer for bringing people together in this format from all over the world! This is incredible considering that this was not even a concept when she was going through her journey in the 80s! This has become a movement of empowerment, as people are participating in their own diagnosis, testing, and treatment! Also, it was very difficult for patients to connect with one another many years ago. However, now, thanks to Mary O, patients are able to reach each other and not feel so alone!
Mary O has a blog radio show where she has conducted interviews with influential people in the community including doctors, mental health experts, and other professionals. She has also been able to interview many patients who heal by sharing their stories with each other.
Mary O wants to support, educate, and share! She has been able to provide support to an entire community of people on her own and with very little funding. She puts her heart and soul into this work because she cares deeply about this community! Mary O has been able to turn her adversity into an opportunity to walk in her purpose to change lives!
Mary Kelly O’Connor is definitely someone you should know! The EPIC Foundation proudly works in alliance with Mary Kelly O’Connor the founder of Cushing’s Help, a foundation dedicated to giving Cushing’s patients valuable information, a space to share their stories, and a place to connect with one another. To learn more information about Mary O and her work, you can go to her website at http://cushings-help.com/ Together, We are EPIC!