Person of the Month-April 2019
The EPIC Foundation proudly announces our Person of the Month for April, 2019, Jenifer Williams. We have come to this special time of year, again, as we celebrate Cushing’s Awareness Month. During this month, it is important to honor those who make significant contributions to our community. Jenifer Williams is a Cushing’s survivor who has taken adversity in her journey and uses her story to inspire others and bring hope to the hopeless! We c celebrate Jenifer as we also celebrate increasing awareness of this rare life threatening illness that is diagnosed in 3 of every million people!
Jenifer’s service to the chronic illness community stems from her personal battle with Cushing’s disease. After finally being diagnosed with Cushing’s disease after a long journey of discovery, Jenifer started a blog, which evolved into a website (www.coulditbecushings.weebly.com).
“I eventually found a friend in Dr. Karen Thames. She asked me to join The EPIC Foundation as a patient advocate, and I eagerly accepted. Less than a year later, I am now Director of Patient and Caregiver Support – a role in which I humbly and honorably embrace and take great pride in!”
Jenifer describes herself as an extrovert by nature. She loves connecting with others who have Cushing’s disease. She believes that it is such a huge learning experience! Jenifer notices the similarities and differences that pertain to their affliction with each person she speaks with. She says “it is truly amazing because we are all unique in our disease presentation”. Jenifer believes in the power of each person’s story and being able to share stories with one another is even more powerful! There is power in our voices! She loves being able to educate people about the disease and even moreso to give others hope!
Jenifer started becoming involved in the community soon after her pituitary surgery in 2014, although at first she had little outreach. First, her story was published in the quarterly newsletter of the Cushing’s Support & Research Foundation. Shortly after that, she created her website and received approximately 60 unique visitors per week. Currently, she has an average of 80-100 unique visitors per week. In 2015, Jenifer reached out to a local newspaper and the editor wrote a story about her Cushing’s disease journey. This generated a lot of local interest and even spurred some heated words from her former doctor who misdiagnosed her and basically blew her off. It was his reaction that inspired her to write letters to more of her former doctors and specialists to bring to their attention that this disease came close to taking her life.
“Because of their oversights and in some cases uncaring nature, I was made to feel like a hypochondriac. I wanted them to know that their method of care was wrong and that they cannot treat their patients in that manner. All of this, in conjunction with my role in The EPIC Foundation helps me carry out my mission of awareness, education, and empowerment.”
Jenifer says that her role model is Dr. Karen, Founder and Executive Director of The EPIC Foundation: “Her inner and outer light, dedication to the chronic illness community through The EPIC Foundation, and perseverance to rise above her own battles with chronic illness inspire me to always do my best! She is a phoenix!! ! If not for her mentoring and support, I wouldn’t have as great of a purpose to be of service, and I feel so blessed to call her my friend.”
Within The EPIC Foundation, aside from Dr. Karen Thames, Jenifer works closely with Mary Daily (Director of Outreach) and Ashley Laxton (Director of Social Media). She says that they are a constant source of motivation and help stir up her creativity! She also leads a devoted and enthusiastic team of advocate volunteers. Jenifer describes them as responsive and supportive. She says that she looks forward to growing that amazing team!
Outside of The EPIC Foundation, Jenifer’s husband and kids show her so much support and encouragement for her involvement as Director of Patient and Caregiver Support. They take great interest in her role!
There is amazing power in the incredible story of Jenifer Williams! Please take the time to read it here:
Jenifer first became diagnosed in 2014. However, she began putting pieces of the puzzle together and traced the disease back to its first visible manifestation in her body at age 17 (1995). By the time she was officially diagnosed at age 36, she knew very little about the disease and wanted to find a way to help others who were like her. However, there was a long journey up to that point in her life…
Jenifer was always bigger than most girls her age as she was growing up, but she was by no means obese. However, once she turned 17, she had been through a few spurts of excessive and unexplained weight gain. She also had the classic Cushing’s buffalo hump at the base of her neck, which she, at that time, attributed to poor posture. Over the next 5 years, Jenifer continued to gain weight and experience health problems such as hypothyroidism and high blood pressure. By 2007, she had been married for 4 years and had 2 beautiful children. In 2010, Jenifer went back to school and became a dental assistant. By this time, her health issues were on the rise and now included hirsutism, insulin resistance, high cholesterol, edema, extreme fatigue, and moodiness. Over the next few years, she found that she was very bulky, bruised easily, and had bouts of what she jokingly referred to as “Incredible Hulk Syndrome” – where she felt like the most powerful person on the face of the earth, then crashed hard later on. By 2013, she was told she also had fatty liver disease and acute glaucoma.
After seeing over 13 doctors and specialists, as well as contemplating bariatric surgery and a breast reduction, she had seen more than her fair share of disappointments. She began to do pretty lengthy research and came to the conclusion that it was very possible that she had Cushing’s disease. With each of these medical professionals, she asked about Cushing’s and was laughed at, deemed manic and even bribed with “magic pills by one endocrinologist. Jenifer sadly felt herself “slipping away”. In March 2014, Jenifer took her case to Cleveland Clinic and by June 1, 2014; she had a confirmed diagnosis by MRI after undergoing months of rigorous testing. Jenifer’s 5x4x3mm pituitary tumor was removed on August 18, 2014. She is currently in successful remission.
Recovery has not been easy. Since the surgery, Jenifer has experienced a 6th nerve palsy which caused her to be cross-eyed for almost a month post-op. She has also since had a hysterectomy that was followed by a severe infection that put her through a 2nd surgery to remove the necrotic tissue and was sent home on wound vac care for 5 weeks. During this time, her sweet dear uncle – Sam Angilella – who was like a father to her, passed away due to heart failure. This was all within her first year of remission. In 2017, Jenifer underwent sinus surgery after unsuccessful treatments of chronic staph infections in her sinuses. In addition, she has dealt with depression. She also has struggled to lose weight and regain energy and muscle strength. Jenifer says that it gets better with each year but that she is still searching for her new “normal.”
Even with everything that Jenifer has been through, she says that getting involved with Dr. Karen and The EPIC Foundation has been so uplifting and wonderful for her and gives her a purpose!
Beautifully stated by Jenifer,
“What started out as a few messages between perfect strangers who share an experience with a horrible disease, to becoming a patient advocate and now the Director of Patient and Caregiver Support for The EPIC Foundation – well, this has been what I consider one of the best and most rewarding years of my life since my diagnosis!”
Finally, Jenifer is extremely talented. As a very visual person, she likes to communicate her thoughts and visions through art and writing. She also really enjoys painting as well as creating graphic art to help with the social media for The EPIC Foundation. She finds it both humbling and exciting to have her creations reach so many! Her mission is to help spotlight and draw even more attention to The EPIC Foundation. She plans to do this both as the Director of Patient and Caregiver Support and Co-Chair of the Social Media Design Team!
During this very special month of April, Cushing’s Awareness Month, The EPIC Foundation is both blessed and honored to give well deserved acknowledgement and praise to this wonderful woman who has taken her past adversity and used it to give back to the community! We are so fortunate to have Jenifer Williams as our Director of Patient and Caregiver Support and a woman that the EPIC family calls our friend and family! Thank you, Jenifer, for everything you give and for everything you do!
Together, WE are EPIC!