|Founder and Executive Director of The EPIC Foundation
Dr. N. Karen Thames, PsyD, Licensed Clinical Psychologist
Dr. N. Karen Thames graduated with her Doctorate in Clinical Psychology from the Chicago School of Professional Psychology in 2005. She worked primarily in the private practice setting with specializations in trauma, women’s issues, marital therapy, and chronic illness. Dr. Karen offered therapy to individuals, families and couples. She very much so viewed her profession as a fulfillment of her God given purpose in life.
Several years ago, Karen began having symptoms that could not be explained including unexplained rapid weight gain, muscle weakness, memory loss, and the sudden onset of diabetes, high cholesterol, and hypertension. She even became completely bedridden. After being increasingly ill for over five years, Karen discovered that she had Cushing’s Disease after watching a Cushing’s episode on the Discovery Channel show, Mystery Diagnosis. She had fought so hard to get an explanation about what was wrong to no avail. However, after discovering she had the same symptoms as the Cushing’s patient on Mystery Diagnosis, Karen asked her local endocrinologist to start testing her. With hesitation, he finally agreed, and she did, in fact have Cushing’s Disease. Dr. Thames sought treatment from a team of specialists in Seattle, WA at the Seattle Pituitary Center because of their expertise and on November 16, 2011, she had life changing brain surgery in which a tumor was removed from the left side of her pituitary.
After one year of remission after brain surgery, Karen learned that Cushing’s was back. A recurrence of Cushing’s was confirmed by several more months of testing. After weighing all available options, Karen moved forward with having a Bilateral Adrenalectomy on August 21st, 2013, in which both of her adrenal glands (which sit on top of the kidneys) were removed. This was her cure, finally, from Cushing’s Disease! Now, Karen is left with a lifetime of adrenal insufficiency. As a result of the Bilateral Adrenalectomy, Karen is steroid dependent for life and must follow strict maintenance in order to avoid adrenal crises, which can lead to a fatality. However, beating Cushing’s, though a difficult decision, made this choice worth it. Karen currently has ties to both the Cushing’s and Addison’s communities.
Dr. Karen has become a strong voice in the Cushing’s community. With the goal of spreading awareness and encouraging empowerment; she has assumed the role as a Cushing’s patient advocate. Karen has the goal of shedding light on this rare illness that is diagnosed in 1-3 of every million people.
Karen speaks to the needs of those surviving chronic illness and posts educational videos to address the emotional processes of those living with a chronic illness. These videos also include answers to the “Ask Dr. Karen” series where Dr. Karen answers various viewers’ questions on issues related to chronic illness. These can be found on: http://www.youtube.com/drnkarenthames
Dr. Karen is the Executive Producer along with CoProducer and director filmmaker, Marc Harris, on the feature length film, Cushing’s Documentary: “Battleground Diagnosis: The War to Survive Cushing’s Disease/Syndrome”. Dr. Karen Thames felt inspired to use her skills to give back to the community that has given so much to her. She believes in the power of connectedness and community and has been proud to be named an advocate in the chronic illness community! Thus, she founded The EPIC Foundation!
Together, WE are EPIC!!!
Dr. Karen can be reached via e mail at email@example.com or phone at 888-862-5554 Ext. 700 Toll Free
|Director of Outreach
Mary Dailey has been with her husband for over twenty two years. Together, they have two children and they currently reside in Northeastern Ohio. Mary comes from a large military family. For that reason, she has traveled the world and is bilingual. Her second language is Italian. Mary has an ear and love for other languages and cultures and embraces diversity. Mary has volunteered a great deal in her life and has worked countless hours helping military families by volunteering with organizations like Army Community Services and the American Red Cross.
In the final trimester of her first pregnancy in 1999, Mary became symptomatic of Cushing’s disease. It was not until 2003 that she received a diagnosis after she went to her OBGYN for answers because she began having irregular periods, excessive weight gain with crazy mood swings and noticed physical changes in her face and body. Thankfully, her doctor had met Mary before she had become ill (when she only weighed 125 pounds) so when he didn’t recognize her at her appointment; he knew there was something clearly wrong. After doing some blood work to check for PCOS and seeing a significant abnormality, he referred her to an endocrinologist. Mary’s endocrinologist ordered several tests including an MRI which showed that she suffered from Cushing’s disease. During her journey with Cushing’s, she developed secondary illnesses such as type two diabetes and hypertension to name a few. After several reoccurrences with pituitary tumors, her doctor at the Cleveland Clinic suggested the Gamma Knife radio surgery which she happily agreed to do. Finally after years of medications like Ketoconazole and Korylm, Mary decided to have a bilateral adrenalectomy (removal of both adrenal glands) so that she could beat Cushing’s for good. It required some lab work to see if she was a candidate for the surgery. After going in for results of the tests and a multitude of prayers from her husband and loved ones, Mary discovered that she was in remission in 2016 and no longer needed the BLA!
Throughout her struggles with chronic illness, Mary was blessed with so many wonderful people who reached out to her in the Cushing’s community. Dr. Karen Thames was one of her sources of inspiration and because of her mission and vision; she chose to pay it forward and make a difference in others’ lives who are battling chronic illness. Mary is deeply influenced by her faith and her love for helping others. She greatly admires Mother Teresa and her life’s works. One of her favorite quotes is “Spread love everywhere you go. Let no one ever come to you without leaving happier.” Mary’s goal is to do just that by sharing EPIC’s mission which is Empowering People with Invisible and Chronic Illness.
The EPIC Foundation is extremely proud to have Mary as our Director of Outreach! Mary can be reached via e-mail at firstname.lastname@example.org or phone at 888-862-5554 Ext. 725 Toll Free
Together, we are EPIC!
|Director of Advocacy
Mary Pidgeon is our Director of Advocacy. She resides in Skaneateles, New York with their youngest daughter, Julianna, who suffers from a host of chronic illnesses.
Mary has been employed in the healthcare care sector for over 30 years. She has many years of experience in leadership roles at local hospitals, Home Care and large health insurance companies such as Blue Cross Blue Shield and National Government Services, a sub-contractor for CMS. During her tenure, she has honed her skills in all of the non-clinical areas of healthcare. She understands the complex issues patients experience from finding the right doctor to obtaining insurance authorizations and dissecting a bill for services performed. She has expertise mentoring employees, managing large teams and building policies and procedures to ensure operational expectations are satisfied.
Mary has personal experience as a patient advocate and shares our mission to help those with chronic illness. Since her youngest daughter was a child she has been fighting to understand various symptoms she exhibited. At 6 years old, her daughter Julianna had extreme neck pain that was dismissed as stress. By 6th grade, she had chronic stomach pain and nausea. Fast forward to today, they are challenged with Ehlers Danlos Syndrome, Hashimotos, MALS and more. Mary’s personal experience with her daughter has opened her heart to knowing that she wants to serve others that battle the healthcare system because of chronic illness. Being part of The EPIC Foundation will give her the platform to do exactly that.
In her free time, Mary loves to spend time with her family and travel wherever they are. She is an avid Baker and loves to be outdoors. She has faith in God and knows her journey is to serve others and to share joy.
We are so thankful that Mary is a member of our team!
Mary Pidgeon can be reached via e mail at email@example.com or phone at 888-862-5554 Ext. 705 Toll Free
Together, We are EPIC!
Stacy Boswell is 44 years old, she has one daughter, a son n law, 3 grandsons and 1 granddaughter. She resides in Cloverdale Indiana! Stacy obtained her certified nursing assistant certificate when she was just a Junior in high school! Since then, she has worked in the medical field of some sort, from a CNA at hospitals and nursing homes, home health, and in the mental health field! Stacy has also worked in a classroom setting with multi handicap children and for a preschool! Her last job before getting sick and being unable to work had her heart! She was a Residential Manager at a facility that housed 20 adult males with intellectual disabilities, mental and behavioral disabilities! It challenged her daily and opened her eyes to whole new world! In January of 2017 is when all of her health troubles came to service full force! Stacy has had her thyroid removed, a full hysterectomy, a bilateral adrenalectomy and also has a pituitary tumor! Stacy has Adrenal Insufficiency, Hashimoto disease, chronic kidney stones, and severe back stenosis! The endocrine system has failed her but has also broadened her ability to thrive in helping others with the same situations! It was a hard long fight to get the care she needed and deserved! Stacy lives to help others fight the same fight, to give them a sense of hope and a sense of not being alone!
Stacy enjoys spending time with her family and friends! Her grandchildren are her life! They are what motivate her to keep fighting! Stacy loves making flower arrangements, Christmas wreaths, diamond painting, any other kind of crafting she can find, watching movies, being outside when the temperatures allow her to! Stacy loves talking to and meeting new people and sharing life experiences! Stacy loves to help others as much as she possibly can.
Stacy Boswell can be reached via e mail at firstname.lastname@example.org or phone at 888-862-5554 Ext. 711 Toll Free
Together, We are EPIC!
Lauren completed her Bachelor of Science in Public Health at Northern Illinois University with an emphasis In health promotion and minor in Family, Consumer, and Nutrition Sciences. At NIU, she was the President of NIU Forensics: Speech and debate and advocated at tournaments across the nation about pressing public health topics including chronic pain. As The EPIC Foundation’s fundraising liaison, Lauren will be utilizing her skills from the Public Health curriculum as well as her communication and writing skills to earn funding for EPIC.
Aside from her role as fundraising liaison, she works in Provider Services at Blue Cross Blue Shield of Illinois. She also works with the Community Outreach department of Advocate Christ Medical Center in partnership with March4Meg: Step up to Stop Melanoma.
As a chronic pain sufferer, Lauren stumbled upon the EPIC Foundation and our mission stuck with her. She wanted to be part of an organization that focused on empowerment to a community that (from her personal experiences) may sometimes be dismissed or lost in the shuffle. Lauren is looking forward to working with the EPIC Foundation and learning more about herself and others through this journey.
The EPIC Foundation is extremely proud to have Lauren as our Fundraising Liaison! Lauren can be reached via e-mail at email@example.com or phone at 888-862-5554 Ext. 724 Toll Free
Together, we are EPIC!
|Director of Patient & Caregiver Support
The EPIC Foundation is proud to announce Jenifer Williams as our Director of Patient and Caregiver Support! Jenifer started with EPIC volunteering as a patient advocate and less than one year later, Jenifer accepted a position as the Director of Patient and Caregiver Support! She leads an amazing team of devoted and enthusiastic advocates for patients and their loved ones, all volunteering their time and all of them are chronic illness warriors themselves! Jenifer is the glue that holds this special team together!
Jenifer Williams is a certified dental assistant with a background in medical/dental and criminal justice. She has a very eclectic background including being involved in social media and website design and maintenance. Her medical background, as well as her own journey as a chronic illness warrior, also allows her to see things from a unique lens.
Jenifer lives in Bear Lake, PA (Warren County) with her husband, two children, and 3 dogs. They enjoy living out in the country! Every year they grow a garden and they even started raising chickens so that they can have their own fresh eggs. They are also fortunate enough to have a small piece of a national natural landmark, Tamarack Swamp, right in their backyard. http://docs.dcnr.pa.gov/cs/groups/public/documents/document/dcnr_20032479.pdf
Jenifer and her family love getting to see the abundant wildlife from their deck or kitchen window, including bald eagles, ducks & geese galore, bear, deer, fishers, and all kinds of other critters!
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…
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!
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! Jenifer is also inspired by co-worker, Janine Gilbert, who is the Senior Editor and Creative Consultant for The EPIC Foundation. Jenifer 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!
The EPIC Foundation is beyond blessed and thrilled to have Jenifer Williams as their Director of Patient and Caregiver Support!
Jenifer Williams can be reached via email at firstname.lastname@example.org or via phone at 888-862-5554 Ext.707.
Together we are EPIC!
|Lead Patient and Caregiver Advocate
Michelle Kelley lives in Jonesborough, TN. She is the mom of two amazing boys, Tony and Trevor. She has an Early Childhood Degree and taught for several years at a local private school. The last six years, she has Homeschooled her boys and enjoys the one on one time with them. Michelle is very active in her church. She is a firm believer in her faith. Her life words are, “BUT GOD.” She desires for her life to be a light for Jesus and to encourage others that battle chronic illnesses to live “one step at a time.”
Michelle was diagnosed with PCOS at the age of 20. She does believe Cushing’s was probable at this time, but not mentioned. For two years she underwent fertility treatments, to only be told she was “too fat” to have a baby, and when she “decided to put food down and stop being lazy,” she would get pregnant. Michelle describes these years as being the “loneliest” of all. She felt shamed and disgraced by doctors and yet her heart knew something more was the cause of her issues. Although Michelle never experienced carrying a baby in her body, God gave her exactly what she needed thru Adoption!
At the age of 40, Michelle’s health began to rapidly decline. She was working out with a personal trainer and yet her weight began to climb rapidly. Panic attacks and anxiety negatively impacted her ability to function. Her blood pressure was severely dangerous, white count level off the charts, headaches and joint pain almost unbearable, along with a list of other things. She began months of testing with Oncologist and Infectious Disease Doctors to just hit dead ends. She was finally sent to an Endocrinologist in NC who would change her life. After 6 months of testing she was diagnosed with Cushing’s disease.
She was referred to the University of VA in Charolletsville, Va. There she met her team of Endocrinologists and Neurosurgeons who took excellent care of her. Within 24-48 hours of surgery, her cortisol levels plummeted to a negative 2. “I thought I was dying,” was how she described this time of her life. From the moment she woke up from surgery, she began to throw up. Everything she would put in her mouth, automatically came back up, and would continue that way for almost five years. She was eventually diagnosed with a mild form of Achalasia and no treatment possible for her at the time.
Two years ago, Michelle met Dr. Chatman a local chiropractor in her area. “Chiropractic care gave me my life back” she says. “Dr. B encouraged me to not give up. To start out with small goals and just keep moving”. He also introduced her to the Keto lifestyle of eating. It was there she finally found a life with very little throwing up. What an Amazing change!!! She has begun to lose more weight and overall feels she can handle what life throws at her.
Michelle’s words to those diagnosed with Cushing’s or in the process of trying to get a diagnosis… “DO NOT GIVE UP! Be your own advocate. You know your body better than anyone else. Do not settle for a life of hopelessness. Breathe. Take each step one at a time. Do not let anyone steal your Joy. And of course, rely on Jesus. Your day may not turn out how you planned but find one positive thing a day, and you will soon see Joy in many more days!”
The EPIC Foundation is proud to have Michelle on our team as our Lead patient and caregiver advocate! As such, Michelle is the right hand to our Director, Jenifer Williams. Michelle helps to lead our team of advocates with a special interest in the spiritual growth of those living with chronic illness and their families. You can count on Michelle with words of encouragement every single day! We are grateful to be blessed by her leadership skills and gifts and are honored to have her!
Michelle Kelley can be reached via e mail at email@example.com or phone at 888-862-5554 Ext. 708 Toll Free
Together, We are EPIC!
Chanelle F. Curtis
|Director of Health Administration Services.
Chanelle was raised by her mother and father (a Special Education teacher, and retired Marine and Social Worker, respectively) in the small town of Stafford, VA. From a very young age, Chanelle led an energetic and active lifestyle that included activities such as dance, gymnastics, and cheerleading, as well as a love for academics. In 2006, at the age of 16, Chanelle suddenly began to experience a slew of unusual symptoms ranging from uncontrollable weight gain, chronic fatigue, mood swings, extreme emotional distress, muscle wasting, insomnia, acne, and hair loss—to name a few. The sudden onslaught of strange medical symptoms rapidly began to affect every aspect of her life including her grades, her ability to remain in any extracurricular activities, and her emotional stability.
After many months of unsuccessful consultations with various Pediatric PCPs about her condition, Chanelle took to the Internet to investigate her symptoms. Because she had hardly ever experienced such unusual health issues in her short life, she began compiling a running log of the daily changes in her weight, mood, and other strange symptoms. It wasn’t until Chanelle stumbled upon an episode of Mystery Diagnosis that covered one woman’s experience with Cushing’s disease was she finally able to put a definition to the seemingly random symptoms she had been experiencing for almost a year. With that knowledge, Chanelle was able to advocate for her right to be seen by a Pediatric Endocrinologist, who was quickly able to identify that she indeed displayed classic symptomology of Cushing’s disease. After weeks’ worth of cortisol testing and a 7 mm benign tumor was found on her pituitary gland following an MRI, Chanelle was officially diagnosed with primary Cushing’s disease at the age of 17.
After her diagnosis followed the first unsuccessful transphenoidal (“through-the-nose”) resection of her pituitary tumor at Johns Hopkins Hospital in 2007, which occurred during the first months of her senior year of high school. However, Chanelle still managed to recover in time to graduate with Honors in 2008. The next year (2009), she underwent yet another unsuccessful brain surgery at Hopkins, which left her with little choice but to have both adrenal glands removed to reverse the Cushing’s completely in 2011. Once finally free of Cushing’s following her Bilateral Adrenalectomy (BLA), Chanelle was able to begin the next chapter of her life with the new—yet much more manageable—chronic condition of Addison’s disease at 19 years old, which she has controlled since then with daily oral steroid hormones, and other hormonal replacement pharmaceuticals. Despite the deterioration of her health, Chanelle continued her schooling and earned her Associates of Science and General Education Certificate from Germanna Community College in 2012.
Along the way, Chanelle participated in a Cushing’s study at the National Institutes of Health (NIH), and had her case anonymously published in a medical journal to further scientific understanding of Cushing’s disease. As a precautionary measure, Chanelle also underwent a round of CyberKnife Radiation Therapy to control any continued growth of her residual tumor in 2013.
Since her last major procedure, Chanelle has gotten married, purchased a home with her husband in Hampton, VA, and continued her education in pursuit of her Bachelor’s Degree at Old Dominion University, from which she graduated in May with a 3.9 GPA.
Based on her connection to Dr. Thames via the online Cushing’s community, Chanelle happily accepted the opportunity to intern with the EPIC Foundation. She successfully completed her internship requirements and earned her degree. Chanelle hopes to use her experience with the foundation to inform her future work in the health care industry, and possibly as a Patient Advocate. Chanelle was promoted to Director of Health Administration Services in July 2020 by The EPIC Foundation.
Despite all of her struggles, Chanelle has remained passionate about the topic of self-advocacy in the face of medical professionals—no matter their credentials. Additionally, Chanelle enjoys activities such as singing, cooking, weight training, and bowling with her dad, and hopes to build up the strength to get back into dance one day.
Together, WE are EPIC!!!
Endewyn A. Inzitari
|Lead Service Dog Outreach Patient Advocate
Endewyn Inzitari resides in Greenwich, Connecticut with their family and dogs. At the age of five, Endewyn was diagnosed with the first of many disabilities, Tourette Syndrome. Throughout the years they were diagnosed with a myriad of other disabilities, eventually leading up to their partnership with a service dog to assist them. Growing up disabled has given them a unique perspective on the world and the people in it. Despite having to face many challenges in their life, Endewyn seeks to empower and assist fellow disabled people through advocacy and knowledge.
Endewyn hopes to go back to university once their health is better managed. In their spare time, they enjoy being outdoors, sewing, reading, cooking, and playing games. Endewyn enjoys living life to the fullest and hopes to inspire others to do the same. Something you can always find Endewyn saying is, “All I want out of life is to help people, and eat lots of sweets.”
Endewyn can be reached via email at firstname.lastname@example.org or via phone at 888-862-5554 Ext.712.
Together we are EPIC!
|Lead Outreach Patient Advocate
Julianna resides in Syracuse, New York and was born with Ehlers-Danlos Syndrome. She fought for 17 years in order to get a diagnosis, despite being sick and having symptoms for her whole life. With one major surgery under her belt, she continues to live with other debilitating symptoms. Even though being sick has been a huge obstacle in her life, she still one day wants to become a marine biologist. Not only does she want to help the environment, she has already dedicated her life to being a patient advocate and spreading awareness about rare diseases.
The EPIC Foundation is proud to have Julianna as our Lead Outreach Patient Advocate! Her areas of experience includes: EDS, Gastroparesis, Chronic Pain, and Youth Advocacy.
Julianna can be reached by email at email@example.com or via phone at 888-862-5554 Ext. 706.
Together, we are EPIC!
|Author of “The Good News” &
Dr. Kimberly Kerley, Psy.D, is a Licensed Clinical Psychologist in the State of Illinois. She has been practicing in a group practice setting for over 15 years. Dr. Kerley is currently seeing clients at Perakis, Resis, Woods, and Associates (PRA Behavioral), a multidisciplinary group practice in Schaumburg, IL. Dr. Kerley’s theoretic approach incorporates cognitive behavioral, insight oriented and solution focused techniques while tailoring to the individual needs of each client. She focuses on assisting clients to build upon their strengths, develop unused resources and learn new skills to decrease symptoms, increase their effectiveness in managing their everyday lives and/or improve their quality of life. Dr. Kerley’s treatment approach is interactive, supportive and respectful to the individual and is presented in the spirit of collaboration. Dr. Kerley works with adults and adolescents. Her treatment areas of focus include Depression, Bipolar and other Mood Disorders, Anxiety Disorders, Stress Management, Relaxation Skills Training, Self-Esteem Issues, Assertiveness Training, Relationship Issues, Personal Exploration and Development, and Chronic Illness.Dr. Kerley is very invested in supporting those who are chronic illness warriors and their loved ones. She strives to change lives effectively and positively through her direct and invaluable advice through her “Good News” column in The EPIC Foundation newsletter. She is also a consultant for The EPIC Foundation and sits on the Mental Health Advisory Board to promote addressing the relevant concerns of the chronic illness community.The EPIC Foundation is beyond proud to have Dr. Kim Kerley as a part of our team! Together, we are EPIC!
|Outreach Patient Advocate
Zane Wilson lives in Indianapolis, Indiana with her dog Lacey, an Irish Wolfhound/Great Pyrenees mix. She loves animals and the unconditional love they provide. She comes from a large family and has 15 Great nieces and nephews.
She has a long steadfast relationship with God and trusts He guides her way. “God you’ve got this and I’ll do my part” was her first thought when finally diagnosed with Cushing’s Syndrome at 56 in March of 2019. Her diagnosis took two and half years requiring countless tests. A tumor on her right adrenal gland was discovered by accident during a heart ultrasound. Most adrenal tumors are discovered in just this way, by accident.
In Zane’s own words:
“One afternoon I was feeling fine and then the next moment I thought I was having a heart attack. My husband called an ambulance, which led to being admitted to Carolina’s Medical Center in Charlotte, NC. During a heart ultrasound they by the Grace of God, scanned down too far over my arendal glands. They told me they thought they saw something, but it was probably just a glitch on the X-ray. They sent me to have it looked at just in case. The radiologist came out afterwards and immediately said “It is just a glitch.” I remember driving home and thinking. “What if he was wrong?” At 7:00 pm the following evening her PCP called and said it was not a glitch and I went to see her the next day. It was confirmed through further tests and she decided to move back home where she had her family’s support and wanted her Medical Care to be from Indianapolis. I just felt more comfortable with putting together a team in Indy, who consisted of a Nephrologist, urologist, my Endocrinologist and my surgeon. I was fortunate to get a top surgeon who was the first surgeon in Indiana to perform surgery using a robotic arm in 2002. I had my Right Adrenal gland and tumor removed in June of 2019. My left gland is still asleep and I take Hydrocortisone daily.
It sure explained many things when I looked back over many years. months leading up to the first blood pressure spike I had that began this journey, I would fall asleep in the middle of conversations, I was having with someone sitting right next to me. That was just one thing. She believes her faith has carried her through this journey, but she also feels an extremely key component to easing symptoms during testing before a diagnosis and during recovery and basically for an overall healthy life in general is setting boundaries. She feels boundaries are key because stress is so toxic, especially for anyone with a chronic illness. “It is important to remove as many stressors as you possibly can from your life. I personally experienced the benefits from doing so when I did. It is difficult because sometimes as this will include long time friends and or family members, but it is a must.”
I highly recommend a book called “Boundaries” by Dr. Henry Cloud. This book really helped me through the process of getting rid of toxic and negative things and people in my life and developing a healthy selfishness.
I have been the victim of sexual abuse and abandoned by my mother, so childhood trauma is also something I can relate too. I do not take meds for anxiety because my body rejects them, but I have managed through counseling over the years to overcome the worst of it. I feel there is always something to be grateful for even if it is something small. Be your own best friend, not your own worst critic because everyone has something special to offer. I draw inspiration from others with illnesses because seeing them be warriors and fight through the hardest of times encourages myself and others in a way nothing else can. So Keep fighting no matter what and you’ll always have something to be grateful for – strength you never knew you had, wherever it comes from! I look forward to helping anyone I can because I truly believe it takes a village to deal with chronic illnesses.”
Zane Wilson can be reached via e mail at firstname.lastname@example.org or phone at 888-862-5554 Ext. 713 Toll Free
Together, We are EPIC!
|Patient & Caregiver Advocate
Spanish Speaking Advocate
Laura Bravo was born and raised in Cuba. At the age of 13, she was diagnosed with Cushing’s disease and had her first pituitary surgery a year after. She and her family moved to Miami, Florida when she was 15 years old. She had a recurrence of the tumor months after she moved and her pediatric endocrinologist at the University of Miami referred her to NIH to have a second surgery. After 4 years feeling like new, Laura started to have high levels of cortisol again, but this time no tumor was seen on the MRI. Laura is right now under medications and waiting to have a third surgery.
Even though it’s been hard for Laura to handle her disease and her school at the same time, she has never given up on her dream of becoming a doctor. Laura is working towards a Bachelor’s Degree in Biology from Florida International University. She is hoping to get into medical school and become a Pediatric Endocrinologist so she can help kids that have gone through her same condition at such an early age.
Laura has always wanted to help people with chronic conditions. She knows how important it is for those people to feel that they are not alone. She started a blog in order to create awareness about chronic and invisible illness and to educate people on this matter. Thanks to this blog, she met The EPIC Foundation team and fell in love with their work. Laura is very grateful to be a part of this organization and hope that with her knowledge and experiences, she can change the lives of many people.
Laura can be reached via email at email@example.com or via phone at 888-862-5554 Ext. 723. Together we are EPIC!
|Patient & Caregiver Advocate
Elizabeth Grenon lives in Dawson City, Yukon, Canada with her husband and three dogs. If you ever watched the TV show Gold Rush, Dawson is the place that they refer to as the Klondike.
She was diagnosed with Cyclical Cushing’s in 2008 and has since had two failed pituitary surgeries and a CSF leak that caused meningitis, a bilateral adrenalectomy (Addison’s Disease), Rapid Arc Radiation (similar to gamma knife radiation) and after everything is currently diagnosed with Nelson’s Syndrome.
She is excited to have the opportunity to help and support people in the way she was helped during her ongoing battle with Cushing’s. Through all her struggles she was able to connect with other people just like her, people who could truly empathize with her and what she was going through and she wants to pay that forward.
One of her favorite quotes that has helped her keep moving forward and knowing that everything happens for a reason is by Wayne Dyer;
“Each place along the way is somewhere you had to be in order to be here.”
Elizabeth can be reached via e mail at firstname.lastname@example.org or phone at 888-862-5554 Ext. 709 Toll Free
|Patient & Caregiver Advocate
The EPIC Foundation proudly announces Kim Quinn as a Patient and Caregiver Advocate! The role of the patient and caregiver advocate involves providing support to patients with chronic illness as well as caregivers.
Kim belongs to a team that makes calls to patients, responds to written correspondences, and promotes advocacy to patients who want to thrive with chronic illness! Kim is just a phone call away and is committed to providing the kind of support that she has sought throughout her own journey. This team is also available to caregivers who seek support from our foundation!
Kim, herself, has had a long battle with a rare life-threatening illness, called Cushing’s disease. She has done everything in her power to self-advocate, self-empower, and get an adequate diagnosis and treatment. Kim seeks to increase awareness of Cushing’s and is passionate about being a part of a team that provides adequate support and helps others advocate for themselves.
Kim can be reached via e mail at email@example.com or phone at 888-862-5554 Ext. 719 Toll Free. Together, We are EPIC!
Brittany Wisowaty was an intern with The EPIC Foundation as a Junior and Senior at Maine South High School in Park Ridge, IL. At the age of 12, she was diagnosed with several invisible chronic illnesses and was put in intensive treatment. Today Brittany is an advocate for teens and children with chronic illnesses. She not only works with The EPIC Foundation but has her own charity “Brittany’s Blankets” in which she sews blankets and personally delivers gifts to terminally and chronically ill children all over Illinois.
Brittany’s life, although difficult, has never gotten in the way of her goals and aspirations. While in high school, she was voted class sophomore president as well as the student of the month on several occasions. She is deeply committed to becoming a social worker and looks forward to earning first her bachelors and then receiving her MSW. She hopes to one day own an Equine Therapy Treatment facility for adolescents with debilitating mental illnesses. After successfully completing her internship with EPIC in May 2020, Brittany was promoted to a Youth Advocate with the foundation.
Brittany can be reached via email at firstname.lastname@example.org or by phone at (888) 862-5554 Ext. 704. Together we are EPIC!
Courtney Thames is a student at Maine West High school. She, as a daughter of a chronically ill patient, chose to gladly accept an internship position at The EPIC Foundation. Although she does not know firsthand what it’s like to deal with a chronic illness, she has witnessed her mother fight through chronic illnesses, such as Cushing’s and Addison’s disease. This helps her understand some of the struggles of living with these illnesses.
Courtney also understands many of the challenges of being a loved one of a chronically ill patient. She uses this experience to help others who are facing similar obstacles. These obstacles include on occasion taking night long trips to the ER or having scary nights where her mother has passed out and is unable to remember her own name due to another episode of adrenal insufficiency. Courtney also remembers feeling very disconnected from her mother at times during her early childhood; she found it difficult to handle when she and her mother could no longer spend the quality time that they used to have with each other; that time was replaced with her Mom getting much needed rest or having to take that annual trip to see her specialist all the way out in Seattle again, 3000 miles away from their home. Courtney knew her mom was doing this all to better herself and to get back to who she used to be; deep down she admired her mom’s willpower to fight, but that didn’t remedy the fact that she really missed her mother and wished that she was well again. Courtney reasoned that surely there were other kids just like her going through similar things and asking that same question: Is there someone out there just like me?
When Courtney found out that she could connect with and help people just like herself through The EPIC foundation, it was obvious to her that she had to join.
Along with her internship, Courtney is on the school dance team and is part of one of the Maine West choirs. She also performs with their vocal A cappella group called the “Choraliers”. She also loves watching movies, listening to music and spending time with her family.
Courtney can be reached via email at email@example.com or by phone at (888) 862-5554 Ext. 717. Together we are EPIC!