I cannot say enough about how Dr. Karen Thames and the EPIC Foundation have helped me. At a time when I was looking for supportive resources and a way connect with someone who could relate to what I was going through, I found Dr. Karen. Her fight to transparently share her journey so that she could help others has inspired me to do the same. The work and dedication that she puts into the EPIC Foundation is indescribable and I could not think of a better way to support her efforts than to join the team!
EPIC is a great organization that ministers to the whole person. They have tools to help people with all kinds of chronic diseases. I was privileged this year to attend their convention in May and was enlightened on how people from all walks of life have come together to make EPIC great. Lastly, EPIC is great because of its founder Dr. N. Karen Thames who instead of allowing her illness to be a death sentence, brought life not only to herself but to the lives of so many others.
The EPIC foundation is there for those of us who often don’t know where to turn. People with invisible illnesses are used to hearing “But you don’t look sick!” You’ll never hear that phrase here because the people at EPIC understand where you are coming from when you look healthy, but can’t take 5 steps. This is a fine organization that will help you every step of the way!
It is long overdue and about time for an organization like EPIC! What a way to empower people with chronic invisible illness. This organization and site can serve as a source of healing and dignity for those in this community. Full of helpful information and resources, this site also facilitates the coming together of many voices who need to be heard. “Together we are EPIC!”
There aren’t enough words to express the adoration I have for Dr. Karen and her foundation! Her perseverance is inspiring and allows others to feel equally empowered!
Founder Dr. Karen Thames of the EPIC Foundation has been a huge part of my life for many years and has been there for me and my family through very difficult times and has given tremendous support and dedication and for that Thank You!
A very positive and supportive place to turn to, especially in times when life can feel overwhelming and a safe place is needed.
The EPIC foundation and Dr Karen are amazing, not just for those suffering from chronic illnesses but also for the family members and friends of those who suffer on a daily. Often people think of chronic illness and think death, EPIC changes that. They not only provide support but also teach you how to SURVIVE.
I am the friend of someone struggling with a physical chronic illness and as a psychologist, I work with many clients who suffer with chronic depression or anxiety as well as physical chronic illnesses on occasion. Common feedback that I have received is that just being there to listen and offer support is very meaningful. So many people have felt abandoned by their friends and/or family because of the chronic nature of their illness. Just sticking with them through the toughest times matters. So, as powerless as you may feel to offer help that leads to changing their circumstances, I encourage you to focus less on what you can do and more on who you can be for the person in your life that is struggling with a chronic illness. If you are someone offering support to an individual with a chronic illness, the EPIC Foundation not only offers resources to help you better understand the experience of the diagnosed, but also recognizes that caring for someone with a chronic illness is stressful for the caretaker too. Only “together we are EPIC,” as they say!
The EPIC Foundation has been a blessing in my life, having gone from one invisible rare illness to another looking for a cure, they are always there to provide me with support and keep me updated on the latest medical information about my rare disease! Thank you!
EPIC is such a wonderful organization of people helping people! I’m so glad I found them!! The support and advocacy they offer to those who live with chronic illness is beyond AMAZING! #togetherweareEPIC
Doctor Karen has always given me such sound advice and really made me believe in myself when Cushing’s and Addison’s really destroyed me. I am proud to be a part of EPIC!
Founder, Dr. Karen Thames, has been of great support to me through the years as I struggled & learned about my own invisible rare disorders: Cyclic Cushing’s Disease (pituitary tumor removed 12/03), then left with Secondary Adrenal Insufficiency, a life-threatening health condition. Her organization provides support and education for those who have invisible illnesses and need guidance. God bless Karen, the organization, and all those who support this foundation, helping The EPIC Foundation continue to thrive.!
Karen and the EPIC foundation has truly been a blessing to me. When I was diagnosed with this awful rare disease in 2009, I found support from Dr. Karen and her groups and organization. It is comforting to know you have people in your corner that know exactly what you are going through on a daily basis because they are going through the same thing. God bless you Dr. Karen and continue to touch lives through your wonderful organization.
Living with a chronic illness is so hard — between doctor’s appointments, managing (sometimes rather poorly) symptoms, remembering medicines, routines, and information — sometimes it feels like no one understands. Living with an invisible chronic illness doubles the struggle because we are often meant to feel like we are going crazy or exaggerating the extent of our symptoms. It is easy to feel alone, trapped, and hopeless, as if no one understands the struggle.
Dr. Karen Thames {and the staff at the EPIC Foundation} is the gentle voice and friend I needed to get through the day to day struggle of living with an invisible (yet overwhelming) chronic illness. Whether I needed a friend and advocate to talk to, referrals to additional resources, or a fighter who would advocate for a better situation for people with chronic illness, I know that I can turn to the EPIC Foundation and someone amazing will answer my call.
Thank you EPIC, for coming alongside me in the struggle and continuing to bring hope to a community of folks who are suffering in silence!
Surgery doesn’t end problems for Cushing’s patients. I’ve had two unsuccessful transsphenoidal surgeries and a BLA (Bilateral Adrenalectomy). In December, 2016, I became acutely ill due to having an adrenal crisis, pneumonia, sepsis, and possible kidney failure, all of which led to my fearing I’d lose consciousness. And so, I quickly dialed 911 for help. My illness resulted in a six-day hospitalization.
Medicare twice refused to cover the ambulance bill. Along with my two appeal forms, I sent a letter from my endocrinologist confirming my need for an ambulance, many excerpts and articles about adrenal insufficiency, and the list of my cardiac issues which are posted on my cardiologist’s website. After the second denial of coverage, I felt so depressed, frustrated, and discouraged that I decided I’d pay the EMS bill.
Dr. N. Karen Thames, founder of The EPIC Foundation, read about my frustration on a Facebook page for Cushing’s patients. She sent me an email offering to help and suggested I contact their insurance advocate.
She emailed me and assured me that she could represent me in pursuing a third level of appeal, the one before an Administrative Hearing Judge. She was so encouraging, I agreed to attempt the appeal. She completed all of the paperwork and sent for the papers I had submitted to Medicare as part of the second level appeal. She established contact with the judge’s office, kept me informed and made sure that I was receiving correspondence from Medicare about the appeal. We had a three-way teleconference with the judge who later gave a favorable decision thus guaranteeing that Medicare would reimburse my payment of the medical bill.
I am truly grateful to Dr. Thames and Melissa Callahan for their generous, effective, and beneficial help. The assistance they provided me represents only a small part of the advocacy, resources, and information available through The EPIC Foundation. The Foundation board members reach out to patients directly as Dr. Thames did with me, and indirectly through the articles on the website which are relevant and valuable for patients with chronic invisible disease and for concerned family and friends as well.
Thanks Dr. Thames for all of the above and all you do! I truly appreciate it!
Hi, my name is Dawn and I’d like to share, with you, my story and how Dr. Karen Thames (and The EPIC Foundation) has made such an awesome impact on my life and my 11yr old son, Jordan, who is Adrenally insufficient. I am currently being tested for recurrence of Cushing’s Syndrome, which has really been rough both emotionally and physically. Dr. Karen often sends messages and placed phone calls just to offer her support, and answer questions (no matter how personal). Her Facebook support group is a wonderful place of support and understanding by others who are either caregivers or others whom has Cushing’s. I am grateful for Dr. Karen and The EPIC Foundation!
Karen Thames has been a constant in my life throughout my journey with my illness. Dr. Thames has provided me and many others in the Cushing’s community with literature, helpful information on our illness, and extensive emotional support for our community. Dr. Thames has not only provided these things to me and others but she has reached out to me personally and shared a gift that was able to raise awareness for our disease. Karen is not only a wonderful, caring woman but she is also a very altruistic, hardworking woman that is determined to help others in need. She will always have my gratitude
Sincerely,
Mary M., Ohio
I have personally known Dr. Karen for over twenty years, and have followed her journey with awe. The first word that leaps to mind when I think of her is “courage.” Her courage, perseverance, and optimism as someone dealing with multiple surgeries and managing daily life with a disability is truly uplifting; more importantly, her courage as an enthusiastic advocate & champion for those overcoming such obstacles in their lives is beyond inspiring. It is with great pleasure that I support her efforts.
Karen has helped me by always listening, educating, and validating my feelings with the process of this crazy disease. Karen has always taken the time (even when she has her own issues with her process) to give me advice and support. Even still, she always makes ME feel like I am #1! She always makes ME feel special! She is a very easy going calm person and that has helped me with my own anxiety around this. I am grateful! Thank you!
Karen has been there for my daughter Sarah and I since the first day we met. She is one of the most positive and encouraging people we have ever met and we love her dearly.
Karen has been a phenomenal leader in the Cushing’s community. She is an illuminating person of inspiration, and a true friend. Being a survivor of Cushing’s myself, I connected with her after seeking help online, and then finding Karen’s initial media on Cushing’s. Inspired by her teachings, I contacted her and she took me under her loving wing. Since then, I have now had the pleasure of participating in some of her most dedicated works. Her dedication and strong spirit keeps us fellow “Cushies” inspired to press on and help others look for a brighter future!
When my mother died September 28th, 2016, I still cannot find the words to describe what she went through or what our family went through in the five months leading up to her death. Afterwards, I started looking around for answers and I found Doc Karen. She helped me to understand a little better about this rare, ugly, horrible, beyond-words disease that had so brutally taken my mother. Cushing’s pounced on us like a thief in the night before we even knew it existed. This movement towards awareness that Doc Karen is leading is so important and will be so helpful to those who can identify it’s ugly symptoms while there is still time. Thank you for welcoming me into this family and may the God of heaven and earth bless your efforts!”
Dr. Karen Thames has assisted me with advice on dealing with family issues regarding relationship challenges and stress. She has offered the right encouragement at the right time to help me regain focus and direction in my life. Her professionalism is commendable but her approach makes you feel accepted and appreciated. Her personal journey and blogs about Cushings, has also been an inspiration to me and my family.
I first met Karen online in 2010 before each of us would have pituitary surgery. I was scared and it was great to connect with her and others who were going through the same struggles. I was blessed in that my pituitary surgery was successful and the doctor was able to leave my pituitary gland intact. When I would see how Karen was struggling with multiple surgeries and then the adrenalectomy, it always amazed me at her attitude and positive thoughts about her life. I’m not sure I could have been so strong and made it as far as she has made it. I just know that she has been such an inspiration to me and countless others in our struggle with Cushing’s disease. I pray that God blesses her and the work that she is doing.
Karen shares her personal journey to help you gain an understanding of Cushing’s. It is so important when you are going through a life changing illness to have a reliable and compassionate resource. Knowledge is power.
Karen is a phenomonal person her personal journey has inspired my own. She openly talked about her Cushings shared her photos and near death experiences. It taught me to listen to my body instead of doctors. I tear up because Karen has been a motivation since we were kids and to see her now I am so proud. Her light has paved a way for me for years. I can’t wait to see what is next.