Meet our Patient Worthy Contributors
Ms. Stephanie Ernst
TAPS Nerd and Founder
A self-confessed TAPS Nerd,her passion is to deliver information about TAPS that is up to date and easy to understand. Stichting TAPS Support makes information about TAPS readily accessible, so that patients never feel alone in their diagnosis, while supporting research.
Tom Seaman is a Certified Professional Life Coach in the area of health and wellness, and author of 2 books: Diagnosis Dystonia: Navigating the Journey and Beyond Pain and Suffering: Adapting to Adversity and Life Challenges. He is also a motivational speaker, chronic pain and dystonia awareness advocate, health blogger, volunteer for the Dystonia Medical Research Foundation (DMRF) as a support group leader, and is a member and writer for Chronic Illness Bloggers Network.To learn more about Tom, get a copy of his books (also on Amazon), or schedule a free life coaching consult, visit www.tomseaman.com. Follow him on Twitter @Dystoniabook1 and Instagram.
Alexis Rosen is a Lyme disease warrior. She is an advocate for mental health care within the Lyme Disease community. She currently has a private practice in Los Angeles, CA where she sees Lyme patients in person, via skype and runs support groups at her local Lyme Literate MD’s (LLMD) office.
Alexis herself has been through the challenges of obtaining a chronic Lyme diagnosis and the rough patches of treatment. While being treated for Lyme, Alexis noticed the lack of social, emotional and psychological support for patients and their loved ones. Since then, Alexis has immersed herself in the Lyme Disease community, where it quickly became apparent to her was how unique, caring and close-knit the this community was. Alexis’ goal in providing Lyme literate psychotherapy is to create a place where patients feel supported in the burden rare disease carries.
Liz has been working in the health field for three years as a personal trainer and nutrition coach at Lifetime Athletic in Berkeley Heights, New Jersey. There she has been successful in her career while completing a second degree in Foods and Nutrition with a concentration in Dietetics. She enjoys living a healthy way of life through exercise, nutrition, acupuncture, and massage therapy. She is passionate about improving the quality of life of other individuals through alternative and integrative medicine.
She was diagnosed with Cushing’s Disease in August 2015, after her symptoms started in the fall of 2012. This has been an amazing learning experience for her, of which she wants to help and inspire others through. @Liz_Calabro_Stacked, (https://www.instagram.com/liz_calabro_stacked/).
Mari is a mom living with multiple chronic illness, including POTS and Fibromyalgia. She’s passionate about spreading awareness of Dysautonomia and encouraging other patients in their journeys. Check out and like her Facebook page Chronically Fallrisk and keep an eye out for her genuine, passionate articles here on Patient Worthy!
Andrea was diagnosed with Ankylosing Spondylitis, colitis, scoliosis, kyphosis, and osteoporosis but none of it has stop her from having a positive attitude and doing what she loves. She found a diet that helps her manage her symptoms and wrote a cookbook, “Pure and Simple Paleo: A Low Starch Cookbook” !
My name is Carolina Sommer. I was born in Medellin, Colombia. I have lived in the Seattle area since I was 8 years old. I went to the University of Washington for my undergraduate degree in Theoretical Math. I got married and became a certified Wedding and Event Planner in 2010. In 2012 I gave birth to my little hero and angel, who has Pfeiffer Syndrome Type 1. Currently, I am a certified Refit Revolution dance instructor, artist, an actress, and the Founder/CEO/President of ‘Born a Hero, Pfeiffer’s Health and Social Issues Awareness’ nonprofit organization. Most importantly I am a stay at home mom and all my life revolves around my faith in God. My hobbies include being with my family, volunteering and giving back to my community, singing, dancing, painting, traveling, experiencing different cultures, playing volleyball, basketball, tennis, rock climbing, surfing, hiking, watching movies, playing the guitar, and being immersed in nature.
Ricki Lewis, PhD is a science writer with a PhD in genetics. She is author of several books on genetics (“The Forever Fix: Gene Therapy and the Boy Who Saved It,” “Human Genetics: Concepts and Applications,” “Human Genetics: The Basics,”) and blogs at “DNA Science” for Public Library of Science. She also writes for Rare Disease Reports and Medscape Medical News. She is a genetic counselor for CareNet Medical Group (ob/gyn) and teaches “genethics” online for the Alden March Bioethics Institute at Albany Medical College.
Kristen is a junior and soon to be senior at Christopher Newport University. She has an Associate’s Degree in graphic design, and is working toward her Bachelors in Fine Arts focusing in graphic design. Kristen has a passion for animals and art, and in her spare time likes to paint, or design on the computer as well as playing with her dog Mr. Pickles. Kristen is happy to be moving on to a new chapter of her life soon, getting married at the end of May 2016 and graduating in April 2017.
Sharon Rose Nissley
Rare Disease Activist | Creator | Interior Designer | Beagle Lover | Artist | Reader | Swims the Sea | Learner | Helper | Dreamer
I have several rare conditions including Klippel-Feil syndrome, Ehlers-Danlos Syndrome, Cervical Dystonia and Vasculitis. As a patient advocate for rare disease, I founded Klippel-Feil Syndrome Freedom to help those who have this rare, congenital musculoskeletal condition, and their families. I have been honored and humbled to be nominated for the Global Genes Champion of Hope award in 2013 and 2015. I am currently advocating for the 21st Century Cures Act and the Open Act, to bring forth better treatments, research, and medications for those with rare disease and beyond. Bottom line: I just want to help those affected by rare disease, and empower our community to dig in, learn, and ask for what we need.
Angie Randall. I’m a new mom to Chloé Renee and Oscar the Shih Tzu, and wife to Bill, my husband of two years. I’m a health and wellness enthusiast, who loves cooking, home decorating, and traveling the world. Oh, and I have Relapsing-Remitting Multiple Sclerosis. Diagnosed since January 2015, my goal is to change the perception of what it means to live with MS through my blog, WellandStrongwithMS.com. You can also follow my journey on Facebook, Twitter and Instagram or email me for inquiries at WellandStrongwithMS@gmail.com.
I’m Nisa, a 25 year old with POTS, EDS, Trigeminal Neuralgia, Chiari (and who knows what else that hasn’t yet been diagnosed). I spend my free time eating fries, photographing life, snuggling with cats and taking naps! The rest of my time is spent creating awesome awareness apparel for my business, Spoonspirations!
Denise Crompton and her husband, Bob, raised 4 children, the oldest of whom, Kelley, had the rare disease of Mucolipidosis 3. The many years that they spent caring for Kelley prompted Denise to write two books. Kelley’s Journey: Facing a Rare Disease with Courage chronicles their own daughter’s experiences. Diagnosis: Rare Disease includes some of the experiences of 12 more families, and was written to help raise awareness of all that is involved in living with rare conditions. All of Denise’s royalties go toward rare disease research. The Cromptons live in New Hampshire, where they spend their retirement years enjoying their many grandchildren, while still reaching out to help families with rare diseases
John M. Baumann inspires people to live their lives to the fullest, with – or without – a life-changing event, and uncover their life’s purpose. In 2002, at 41 years old, John was diagnosed with Parkinson’s disease. He continued to work as an Executive Officer & General Counsel until 2008. John taught law until 2014 in the College of Business at the University of Louisville to over 1,000 undergraduates. He is very proud of being selected the Most Inspiring Professor by the Scholar – Athlete of the Year. Mr. Baumann has become a critically-acclaimed author and internationally-recognized inspiring success speaker. His book is aptly entitled “Decide Success – You Ain’t Dead Yet.” He has also contributed to a book “Roadmap to Success” along with Dr. Ken Blanchard and Deepak Chopra. John graduated from Cornell Law School, passed 3 bar exams, has been a guest commentator on CNN Headline News and has hosted an Internet talk show on success (with more than 50,000 monthly listeners). John enjoys facilitating workshops on success for employees of up-in-coming as well as established companies. He also provides keynote speeches at annual association and corporate meetings. His website is simply JohnBaumann.com. John was recently elected to the World Parkinson’s Program Board of Directors.
Angela Davis is a rare disease writer and advocate. She was published in last year’s congressional press release to support and fight for the ultimate passage of Cures Now, and she has 16 published pieces on The Mighty. She is also a published fiction writer and is working on her first novel every time her disease permits. Her pieces on rare disease have been shared by prominent organizations such as Global Genes and NORD. Once a busy writer, Angela grew progressively debilitated over 22 years with the rarest 20% of a rare neuromuscular disease, Stiff Person Syndrome, which affects one in a million and has no effective treatment or cure. She lives and battles for medical care in Bar Harbor, Maine with her devoted husband, Devin. They have one sassy rescue cat named Maeve. After care at UCLA Neuromuscular Clinic and Johns Hopkins, Angela is now without any specialist attention since she has exhausted help from top rare neurological doctors in the USA. Angela’s Twitter: @DavisAngesdavis, Facebook: angela.s.davis.37
Sarah is a rising third year at the University of Virginia in the McIntire School of Commerce, and she hopes to supplement her anticipated business degree with a Master’s in Public Health. In her free time, Sarah loves to do yoga, travel, and eat at vegetarian restaurants. Five years ago, Sarah was diagnosed with a rare form of psoriasis and has since struggled to gain acceptance of her condition, leading her to write about experiences and contribute to the Patient Worthy community. Follow Sarah on Instagram here!
Karen Richards is a high school student living with multiple rare diseases including: Connective tissue disorder of unknown origin, Dysautonomia, Complex Regional Pain Syndrome, cranial vascular insufficiency due to stenosis, immunodeficiency, mast cell activation disorder and mitochondrial dysfunction. However you will soon learn this long list does not speak much for Karen. Karen’s passions are what speak loudest in her articles. She is passionate about advocating for the chronic illness community, and writing. Karen loves to spend her free time writing and hopes to share love and joy with all readers. Karen is the author of the children’s book: When I close my eyes. She also manages the website sweetlemonpies.com.
Thanks for stopping by! My name is Charlene Marshall and I am 29-years old. In April 2016, after thirteen months of testing and various appointments, I was diagnosed with idiopathic pulmonary fibrosis (IPF) and my life has changed dramatically since then. Until I started experiencing respiratory symptoms in 2015, I was a very active young adult and enjoyed running, hockey and swimming. I also maintained a very active social life which included spending time with friends and family, regularly going to the beach and random road trips that explored the countryside. I have two nephews that I adore, and a new puppy who takes up most of my free time by wanting to play, constant cuddling and chewing up various household items. Shortly before my diagnosis, I discovered my love for traveling and have spent time exploring North America from the western US states, to the New England region and back up the Eastern Coast of Canada. I have also travelled overseas to Australia and am looking to explore Fiji, Bali, the Maldives and New Zealand in the next few years! I have decided to write for Patient Worthy as a contributor because I believe that everyone is in a position to learn from one another. In my experience thus far, while journaling my experience with IPF, I have come into contact with other patients who are wonderfully supportive and experiencing this same journey as I am. It is my hope to write about IPF in a way that is relatable for other patients, while showcasing the vulnerability, raw emotion and reality that comes with facing a life-threatening illness as a young adult. My contributions won’t be about medical treatments and trials, but will instead focus on the social and emotional difficulties and triumphs that many patients experience while living with IPF. Thank you for joining me on this journey and I look forward to sharing some future stories with you.
Julie Nevin: I am a nurse who suffers from spasmodic dysphonia and is living and working in London. I am a proud owner of a cat who thinks she’s a dog. I enjoy walking, cooking, coffee and cake and of course writing. I struggle to work full time due to the challenges I face with my voice. I am interested in looking into writing jobs, working with charities and raising awareness of this poorly understood neurological condition.
Rebekah Palmer is the author of two books published by Aneko Press: A Letter to my Friend and A Letter to Myself. She also has poetry included in the anthology Strength: Lives Touched By Cystinosis. She is a rare disease news curator for her blog Cystinosis Society. Please visit her author profile on Goodreads and her author page on Facebook called Jairus Daughter to ask any questions or to reach out.