The EPIC Foundation would like to recognize Mary Kelly OâConnor as a pioneer in the Cushingâs community as an advocate and life changer! Mary Kelly OâConnor is Person of the Month for May, 2018!
Mary Kelly OâConnor is the founder of Cushingâs Help and has been providing support to the Cushingâs community for almost 20 years! Maryâs 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 âmoon faceâ and a âbuffalo humpâ 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 âIf you have these symptomsâŠask your doctor about Cushingâsâ. After that, Mary began assertively seeking answers. However, doctors would say that Cushingâs 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 husbandâs 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 Cushingâs. Mary was referred to an endocrinologist who ran further tests.
The endocrinologist confirmed Cushingâs but ultimately Mary O was referred to NIH (National Institutes of Health). NIH was doing a clinical trial of Cushingâs. While she was at NIH, Mary O was gaining about a pound a day! Adrenal Cushingâs 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 Cushingâs 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 Oâs Cushingâs Disease. Mary O achieved remission from Cushingâs and she gets tested regularly to confirm that she has sustained remission.
Because of Mary Oâs 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 âliveâ 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 OâConnor is definitely someone you should know! The EPIC Foundation proudly works in alliance with Mary Kelly OâConnor the founder of Cushingâs Help, a foundation dedicated to giving Cushingâs 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!
âThriving With (       )⊠A convention empowering those with Cushingâs Syndrome and other Chronic Illnessesâ
August 8th-August 11th, 2019
The EPIC Foundation proudly announces our upcoming first annual convention!
Get ready to come and meet other chronic illness warriors, get support, and take classes that will help you learn how to THRIVE with chronic illness!
Come out and meet our Keynote Speaker, Teresa Tapp, Founder and Creator of the T-Tapp workout, a rehabilitative workout that is no impact but produces real results! Teresa Tapp cares deeply for the chronic illness community and changes lives every day!
Our first annual convention is taking place in Chicago, IL near OâHare Airport:
Have you checked out The Epic Foundation? I encourage you to do so. Cushie comrade Karen has dreamed of starting this non-profit to help Cushing’s patients and others with invisible diseases. In 2017, Karen debuted EPIC.
Please take a moment to read about EPIC Together’s Person of the Month, Alicia Held.
        