I started my health journey about 5 years after I was diagnosed with Migraine Disease. I grew up dealing with Migraine symptoms, IBS flares, and Anxiety but never got help with my hypersensitivities until recently. I have always lived an active and healthy lifestyle, but once my Migraine attacks became chronic in 2012, I had trouble handling daily stressors and could feel that I was not living life fully. From that point forward, I made a choice to put my health first by being my own advocate and researcher. I delved into the chronic illness community for support and to share my story, and I’m so happy that I did! I’ve been able to make conscious choices that have turned into healthy habits that affect my overall well being. Because I choose to put my health, my mindset and my wellness first everyday, I’ve been able to cut my Migraine days from 15+/month to 5 or less/month. I now feel like I have a life worth living because of my lifestyle choices and I share my journey in hopes of helping others who struggle daily like me. Having support, empathy and understanding are so important and I’m so grateful to not only have this from my community, but to also give back to others. We are more than our chronic illnesses, we are wellness warriors!
Amanda DeJesus is a heart transplant survivor and Chef. She graduated from The Art Institute of Houston in Texas. She is currently a co-host of the Podcast Unfiltered Survivors. Amanda’s goals are to use her creative talents, training and devotion to living a healthy life and incorporate her passion of food and nutrition to enhance her life and the life of other heart patients. Amanda served as one of the 2017 National Go Red Spokeswomen for the Go Red for Women campaign and volunteers with the American Heart Association, LifeGift and Donate Life America.
Jeanmarie was diagnosed with Lupus Nephritis when she was 16 years old. At the age of 24 she received a kidney transplant. The gift of life selflessly came from her father. Jeanmarie experienced Acute Cellular Rejection and successfully underwent treatment to save her transplant. Currently she is being treated for Antibody Mediated Rejection with monthly IVIG treatments. It has been quite the balancing act with Lupus, transplant, medications, doctors, family and friends but she still maintains an active outdoor lifestyle. Jeanmarie loves hiking, traveling, writing and photography and she enjoys bringing the outdoor experience to everyone with her photos. Since the transplant 14 years ago, she found the key to her success has been through a plant-based diet, exercise and positive attitude. It has been challenging for people to understand she does not carry her illness on the outside, but on the inside. She does not “look” like how she feels. Jeanmarie has a passion for helping others with her extensive knowledge navigating through transplant life.
In 1975, at the age of ten years old, Gary Klausner was diagnosed with Cystic Fibrosis– a life threatening disease with an average life expectancy of 16 years old at the time. For the past 45 years, he has faced every challenge head on with his “Never Say Never” attitude and has been an inspirational and motivational force to all who have met him. At the age of 33, Gary left his six day old twin boys and wife to move to North Carolina to be waitlisted for a Double Lung Transplant at Duke University Hospital, not knowing if he would ever see them again. Since receiving his Double Lung Transplant in 1998 – Gary’s mission has been to spread the word about Organ Donation and Cystic Fibrosis. He has been featured on several television shows including: “Bravo TV Channel – Queer Eye for the Straight Guy”, The Discovery Health Channel – “Beating the Odds” and News 12 Long Island.
In addition, he has been honored by several organizations and companies including the Boomer Esiason Foundation and Genetech’s “Heroes of Hope” award for his courage and inspirational achievements.
In his profession, Gary is consistently recognized as a national top performer in medical sales winning multiple achievement awards.
Shahid is an author, Specialist Biomedical Scientist, HCPC Scientist, Chartered Scientist, an Academic Scientist, Writer, Presenter, Co-Founder and CEO, Lecturer, Supervisor, Researcher, Blogger and Healthcare Contributor. Shahid was Advancing Healthcare Awards (2018) Finalist. Shahid has been involved in the development of key practices through a number of working groups/ panels. He was a member for NHS Blood and Transplant (NHSBT) Paediatric Kidney Advisory Group (PKAG-sub-committee 2009-2011) and was a member of the British Association of Paediatric Nephrology (BAPN) (2011-2014). Shahid was involved in the development of the BAPN; Nephrology Networks Guide (2012) and was also a member of the Kidney Research Education Initiative (KREI) (2010-2013). Shahid has led and collaborated to inform renal health projects. Shahid has collaborated through multidisciplinary teams and formed a number of publications. His research continues to stimulate intrigue to those in renal and wider healthcare. Shahid has presented work locally, regionally, in various European countries and internationally. Shahid continues to look for paper and research collaborations in effort to widen understanding in areas relating to Long-Term Conditions (LTCs), clinical and scientific practices. He was diagnosed at 2-months of age with Congenital Renal Dysplasia. Shahid had his 4th renal transplant in 2007. Shahid teaches biomedical science on a sessional basis. Shahid enjoys Fitness Training, Roman-Greco Wrestling, and Strongman.
I went in to heart failure through a viral infection in December 2018/ January 2019. Previous to this, I had been completely well. Unfortunately, the infection took hold pretty quickly and my consultants believed I had Dilated Cardiomyopathy; my heart was severely scarred and unable to pump the blood around my body like it should. After months of tests and just six weeks on the urgent transplant list, I received my new heart in May 2019. The first year is the most critical and risk of infection and illnesses will always be high due to the need for immune suppressant medication. I am spending the first year getting my strength back by going to the gym, walking my dog and I have recently started yoga again. I also hope to attend and participate in the British Transplant Games this year.
Aside from this, I enjoy traveling, drawing, dancing and you will often find me with my friends and family, enjoying their company whenever I can. I have 5 wonderful siblings, and 4 nieces and nephews, so life is far from boring. I like to write, and hope to start a blog as soon as I can. I also help out at staff training events for doctors and nurses by publicly speaking about my journey. Public speaking does not come easily to me, but if I can, I would love to push myself to do more to help people in the transplant community. I am so happy and grateful to be alive and it is all because of a donor. Organ Donation saved my life and I hope to never take life for granted again.
Stacy Hurt, M.H.A., M.B.A. is an award-winning 20+ year healthcare executive, stage IV colorectal cancer survivor, and rare disease/special needs mother. Her story has been featured on ABC World News Tonight with David Muir, the Today Show, Inside Edition, Fox News, Huffington Post, in People magazine, Forbes magazine, and Travel and Leisure magazine. Stacy has voluntarily served as a patient advocate for thousands around the world. As a Patient Experience Consultant and keynote speaker, Stacy transforms companies and health systems to better serve their end users by incorporating her unique professional/patient/caregiver perspective and easy-to-use, revenue generating tools. She was selected as one of ten #HIMSS20 Digital Influencers. Stacy resides with her husband and two sons in Pittsburgh, PA.
In 2015 she was diagnosed with Multiple Sclerosis. While the diagnosis was hard the answers were a source of relief. Ann Marie uses her diagnosis to show others living with an invisible illness that you can celebrate the small stuff while living with a chronic illness.
Stupid Dumb Breast Cancer is Ann Marie Giannino-Otis’ fierce and unconventional initiative to promote awareness, early detection, and advocacy, with a special focus on how the disease impacts younger people. On behalf of her organization, Ann Marie has been featured in area publications, appeared on TV, local radio, and Huff Post Live, and hosts a series of monthly events. Since its inception in 2012, Stupid Dumb Breast Cancer has raised and contributed over $750,000 to a variety of breast cancer organizations, including Stand Up to Cancer, Duke Hospital, Wilmot Cancer Center, the Upstate Cancer Center, CancerConnects, Personal P.Ink and the Maureen’s Hope Foundation.
Ann Marie communicates regularly with a growing network of patients, their loved ones, and supporters via a variety of social media, where she candidly shares her thoughts and experiences and welcomes others to join the conversation, discover their own strengths, and discuss their journeys. The advocacy extends from breast cancer to MS and mental health.
Christel is a Los Angeles based speaker, writer, diabetes coach and diabetes advocate. She has been living with type 1 diabetes since 1997 and at an early stage decided that it wasn’t going to slow her down. Her motto is “There is Nothing You Can’t do With Diabetes”. She writes about how to be Fit With Diabetes on DiabetesStrong.com. She also coaches people with diabetes from across the globe, online and in person, and supports them in meeting their health and fitness goals.
Christel holds a MBA in Finance & Strategy and an ISSA Personal Trainer certification with specialization in Fitness and Diabetes (Level 3 certified from the Diabetes Motion Academy).
Sofia is 25 years old and has been living with type 1 diabetes for 10 years. In 2013, she was diagnosed with Ulcerative Colitis as well, now struggling with both chronic conditions on a daily basis. She has been running her own business since 2014, including lecturing, blogging (www.diabetesia.se), Instagram (@diabetesia.se), consultant jobs for med tech companies, event planning and more. She wants to make a difference, break down prejudices, raise awareness and make sure no one feels alone in their condition.