We are grateful to these Sarcoidosis Warriors for sharing their stories, and for all they do to support the sarcoidosis community. You are not alone. Together, we are Stronger Than Sarcoidosis.
Patricia Brooks Hart
Patricia Brooks Hart does not think of herself as a sarcoidosis warrior, even though she is in a fight for her life. Rather, she hopes to end the fight and declare a truce, at least until we can find a cure. To do that, she has tried to learn as much as possible about how sarcoidosis affects the body, and how to practice good self-care to better withstand the disease and the side effects of medication. Pat was diagnosed in 2010 and three years later had to leave a 35-year career when sarcoidosis took her down. As she began the journey back to health, she was searching for a way to feel useful, and that day came when Ed Haskins asked her to join the admin team for his new Facebook group, Sarcoidosis for Beginners. This group is for anyone who wants to learn about sarcoidosis, since there is so much mystery that we are all beginners. Pat spends time researching information from credible sources to share, and the group provides a place where people can learn about the disease, learn how to advocate for themselves, and rely on each other for encouragement and support. As an offshoot of that group Pat created two pages just for informational purposes, "Once Upon a Time: Sarcoidosis for Beginners" and "A Holistic Approach to Managing Sarcoidosis." These pages serve as a place to share information with people who may not want to be part of a support group. Pat soon realized that the Holistic Approach to Managing Sarcoidosis is actually nothing more than a comprehensive approach to managing your health, whether you have a chronic illness or not. As a result, she expanded her horizons and became certified as a health and wellness coach to help others not just survive but thrive through better self-care that nourishes the mind, the body, and the spirit. You can follow Pat on Facebook at iHart Wellness or on Instagram @ihartwellnesscoach.
I was diagnosed in 2014 after the all to common 7+ years of the diagnostic odyssey. My sarcoidosis is in my heart, lungs, lymph nodes, and spleen at this point. Last month I had my 3rd ICD (pacemaker/defibrillator) implanted, I am 99.8% dependent on Vivian III. Yes, I name my pacemakers, Vivian, as the name means ‘full of life’. I started advocating for Sarcoidosis in 2015 and have not stopped since. In 2019, I worked to get 2 Sarcoidosis Awareness Day Proclamations from my town and from my county in NJ. I have met some of the most courageous, bold and kindest Sarcoid patients over the past 6 years! In 2020, I started working at the EveryLife Foundation for Rare Diseases as the Patient Engagement Consultant. I work to ensure and support their mission to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures! If you are interested in getting involved and learning more about how you can share your story, share your voice for impactful change for the Sarcoidosis community, please contact me. With many others, I am working on building up our purple army of Sarcoidosis Warriors!!
My name is Susie Torres. I was diagnosed with Sarcoidosis on July 29, 2017 but I think I have had it a lot longer than that. I will never really know. I have been sick a lot in my life. Most of the time I didn't know why. I was told that I was a hypochondriac as a child. That is a big word for a little girl. It felt very ugly. 2017 wasn't the first time that I became disabled. I became disabled and overcame it multiple times in my life. I was usually convinced that I really was lazy and figured out how to quit being lazy. Since being diagnosed with Sarcoidosis I have learned that it can get worse and get better throughout your life. For me the cycles last for years. I never know from day to day if I will feel good or not. It is frustrating because it makes me feel unreliable. As I get older I wonder if I will feel better again? Is this just what life will be like? The answer is that no one knows. In the meantime I will use my love of people to spread awareness and let other Sarcoidosis Warriors know that they are not alone.
Stacy Sneed wears many hats, she is a Sarcoidosis Warrior, an Entertainment Booking Agent, and the CEO/Founder of the Women of Life Changing, Inc. Born in Philadelphia, PA, and raised in Alabama, Stacy moved to Maryland after graduating high school to further her education in Mass Communication. She is currently residing in Charles County, MD and has been married to her “rock” for 25 years, and has three beautiful adult children. Stacy has worked closely with numerous entertainers in the entertainment business. She featured in the Afro-American Newspaper, the Southern Maryland Newspaper, and a Guest host on the Steve Harvey show WHUR –FM 96.3 radio station in Washington D.C., Guest Co-Host on WBGR-Gospel Network in Lanham Maryland, and a Guest host on the Erika Campbell show Praise104.1 FM in Silver Spring Maryland. She was featured in the National Black Guide Magazine, the Empeccable magazine, and was also able to include over 100 photos of Sarcoidosis warriors and supporters around the world from her social media platform to also be featured. Stacy Sneed is very passionate about the needs and goals to help people with life-changing situations from all walks of life. She founded professional success after having a fundraiser on Stomping out HIV-AIDS through Hip-Hop in Charles County Maryland. She also brought the community together for fundraisers for women living on the streets and in homeless shelters by donating business attire for those women who are transitioning back into the working world. She is a 21-year Sarcoidosis survivor who is dedicated to spreading awareness for this mystery disease that so many people are unaware of. Stacy Sneed and her sponsors donates all year round worldwide to Sarcoidosis warriors. She is also a motivational speaker for “Sarcoidosis” where she travels from state to state educating people about sarcoidosis. She launched the “Purple Makeup Movement for Sarcoidosis women and the Purple Shirt and Tie Movement for Sarcoidosis men.” She also Launched #1001 Sarcoidosis women and men fighting for a cure. Stacy Sneed enjoys spending time with her family and closest friends she also enjoys cooking, musical stage plays, traveling, reading, concerts, and meeting people. Her new book should be coming out soon and she just launched a cooking channel on YouTube.