Person of the Month-August 2018
The EPIC Foundation is honored and proud to announce our Person of the Month for August, 2018, Carolyn Pilgrom. Carolyn has been giving of herself, tirelessly, to the Cushing’s and Addison’s communities to increase awareness and provide support for years. Carolyn has been with The EPIC Foundation since incorporation in 2016. EPIC is so blessed to have her as The President of the Executive Board of Directors. Currently, she works so hard to help bring to fruition the mission of the organization in bringing support, advocacy, and tools of empowerment to the chronic illness community. She is a gift to the chronic illness community.
Carolyn Pilgrom has an amazing inspiring story of survival: She started getting sick during her freshman year of college. In only 6 months, she gained 50 pounds. She gained 220 pounds in only 3 years. Her blood pressure went from 110/70 to 170/135 despite any medications. The doctors told her that she was just fat and lazy. Other theories included that maybe she had sleep apnea or maybe it was her thyroid.
In 2008, Carolyn was watching an episode of House MD, when it featured a disease that she had never heard of before, Cushing’s disease! She immediately started looking it up and diagnosed herself in less than an hour. Carolyn went to the doctor and the doctor said, “It is too rare and unlikely, I doubt you have it.” The doctor did one test, which came back below normal and decided that it was confirmed she didn’t have it. After trying several doctors and starting to bring a binder with all the evidence, a checklist of symptoms, and pictures of herself, she finally gave up and decided that she was really just fat.
A year later someone from a Cushing’s support site told Carolyn of a doctor in Kentucky who specialized in Cushing’s and would help her. She packed up and drove to Kentucky, and upon seeing her, the doctor said “How long have you had Cushing’s?” Carolyn says, “I was beside myself with joy that I was on my way to a diagnosis.” The doctor ran all the tests and Carolyn had enough high results to clear her for surgery of the Pituitary micro-adenoma found via MRI.
Carolyn had her first transphenoidal pituitary resection in October 2009. The surgeon had taken a piece of her pituitary from the wrong side. Carolyn had to go for a second surgery in April of 2010 with a new surgeon and endocrinologist in Boston MA. However, unfortunately, the second surgery did not relieve her symptoms. Carolyn finally had a bilateral adrenalectomy (BLA) removing both of her adrenal glands in June of 2011. This is considered a last resort surgery to finally rid a patient of Cushing’s. Carolyn had to take three more years off of work and school, but she was able to get back to full speed in 2014. Removing both adrenal glands leaves a patient with Addison’s/Adrenal Insufficiency.
Now, as a result of the last surgery, Carolyn is an Addison’s disease patient. She replaces her Cortisol by taking injected intramuscular shots daily. She is also working through hypothyroidism, but she is THRIVING!
In Carolyn’s own words, a message from Carolyn Pilgrom:
“The EPIC Foundation has given me the opportunity to help others with similar stories to mine. The need for advocacy and mental health assistance in the chronic illness community was an unanswered need.”
I am the President of the board for The EPIC Foundation. Thank you so much for supporting EPIC as we continue to grow and improve. This organization and the people who work hard for it every day mean the world to me as I also live with chronic illness, and not just one! I spent 4 years of my life unable to be a college student, unable to work, and unable to dream of the future, because I was undiagnosed, at the time, with Cushing’s disease. It wasn’t until I learned as much as I could, and advocated for myself that I was able to reach a diagnosis to eventually be cured. As Doctor Karen likes to say “Cushing’s never really goes away,” and that was true for me as well. 7 years after having my adrenals removed, an ectopic adrenal tumor was found, increasing my cortisol again. It tends to cause other issues down the road we well: hypothyroidism (I developed this four years after my BLA), Hashimoto’s thyroiditis, various auto-immune conditions (like celiac in my case), and reproductive disorders. Sometimes, it feels like one has too many problems, but dealing with them makes patients and caregivers unique and rare. With help from EPIC, we will persevere!
To discuss and plan for EPIC’s growth, the board had an in-person meeting in May, near our headquarters outside of Chicago, IL. We made many changes, including making membership free, updating the organizational chart for smoother operations, voted two new members to the board, and discussed a plan for fundraising and sponsoring the upcoming convention. The meetings were very successful, and it was so inspiring to be in a room with such powerful women, all dedicated to our cause. After two days of meetings, we had a cultivation event for potential members, sponsors, and staff. Doctor Karen told her story, as did Davita Garfield, and myself.
There were people in attendance at the event who knew nothing of what patients of invisible chronic illness go through on a daily basis and were so touched by the stories. Several people approached me after the main event and said they wanted to bring more attention to this issue, now that they know about it. This proves that it is important to share our stories, they help to educate and spread awareness of these rare conditions that many of us suffer with in silence. I know the worry that we are talking too much about ourselves, or that you have told this story for the millionth time, but just know that it is important for yourself and the community at large.
Now that I am less sick than I used to be, I am so active my husband always worries that I may collapse. I am living proof that there is light at the end of the tunnel. Working for EPIC helps me to give back to the people who helped me to get diagnosed and survive. The job of the board is to make sure that the organization is successful, and help Karen to do that in any way that we can. Thank you for being a part of this and I look forward to seeing you at another cultivation event or the convention! ~Carolyn V. Pilgrom”
Carolyn Pilgrom is a true asset to The EPIC Foundation and to the world! She has truly taken her past adversity and turned it into an opportunity to walk in her purpose and to give back! We honor her as Person of The Month because of who she is and how she continues to serve the community!
Together, WE are EPIC!!!