MEET
About This Inititiative
SCLERODERMA STORIES
Published in January 2020, the first issue of Scleroderma Stories featured the journeys of people living with scleroderma in US states from coast to coast as well as in countries such as South Africa and Canada. By sharing scleroderma warriors’ hardships, triumphs, passions, and more, this initiative not only raises awareness but also helps patients understand that they are not alone. Each new issue of Scleroderma Stories emphasizes that scleroderma warriors can live incredibly rich lives – even with a chronic disease.
Every person with scleroderma has a different experience. Scleroderma Stories aims to highlight each person’s unique journey while fostering connections and ensuring that every scleroderma warrior feels seen and understood.
ISSUE 5
flip through or click on the profiles below to read each story
Aneila Vargas
Born in Puerto Rico but living in Florida (United States), Aneila loves art and channels her passion for drawing into @agirlwithscleroderma – an Instagram account featuring illustrated content in both English and Spanish.
Alayna Roberts
A data scientist living in Chicago, Illinois (United States), Alayna enjoys sports, fitness, and being active – softball, beach volleyball, lifting, swimming, biking… she does it all!
Cheryl Iddon
Cheryl from Warrington, Cheshire (England) is a mother of three, obsessed with organization and tidiness, and recently decided to skydive to raise money for SRUK!
Emily Grace Romero
Having transformed her life by maintaining a positive mindset and prioritizing her health, Emily Grace Romero from Colorado Springs, Colorado (United States) is passionate about holistic and functional medicine.
Evamarie Gilbes-Cole
A prominent advocate and leader from New York (United States), Evamarie Gilbes-Cole has a unique goal of staying with a scleroderma friend for more than 24 hours in every U.S. state.
Luisa Ruiz Kulig
Luisa Ruiz Kulig, who lives in Florida (United States), has a passion for exploring various technologies and gadgets that can improve accessibility and quality of life.
Mercedes Howard
With the help of the Department of Rehabilitation, Mercedes has gone back to school as a student at University of California, Riverside (United States) to pursue a Bachelors degree and eventually a Masters in Sociology.
Nayanashree Sanikop
A lover of travel, Nayanashree (Naina) Sanikop from Karnataka (India) was diagnosed with scleroderma when she was around 17 years old.
Rashmi Bhasin
Leading Scleroderma India, Rashmi Bhasin lives in Mumbai (India) and dreams of growing the organization to better support patients.
Sarah Medeiros
Originally from Hawaii, Sarah Medeiros now lives in Portland, Oregon (United States) and sees herself working in the healthcare field to further patient care and general wellbeing for the rest of her life.
Tameka Nelson
Sharing her “It Coulda Been Worse” mindset, Tameka Nelson from New York City, New York (United States) instills hope, shares her story, and even has her own t-shirt line.
Tom Fry
After noticing stiffness and swelling at the gym, Tom Fry was eventually diagnosed with systemic scleroderma in 2020 and now engages in advocacy and awareness efforts from his home in Pennsylvania (United States).
Yogita Sharma
An associate consultant for Ernst and Young in the healthcare sector, Yogita Sharma lives with systemic sclerosis in Delhi (India).
ISSUE 4
flip through or click on the profiles below to read each story
Jojo Santos
Jojo, an event chef who loves art, lives in New York (United States) with her three children.
Elodie Allen
Seasoned trapeze artist Elodie currently lives in England (United Kingdom) with her partner; she loves working out and practicing circus arts.
Elesha Velasco
Located in Houston, Texas (United States) with her son, parents, and sister, Elesha is passionate about makeup and cooking.
Marissa Villa
Born and raised in Canoga Park, California (United States) Marissa lives with her dog Pancho, and loves to have brunch and bingo with her friends!
Sarah Bryant
Sarah lives in British Columbia, Canada with her nine-year-old son and likes to go for walks, try new restaurants, and skateboard!
Gregory Cohen
Pursuing a doctorate in public health, Gregory lives in California (United States) and began running marathons as a way to raise awareness for the scleroderma community.
Natasha Sisodiya
With a love for health and a passion for cooking, Natasha – also known as the food blogger @bytesofyum – currently lives in Los Angeles, California (United States) with her husband and two sons.
Maria Cestaro
Maria lives in New York (United States) and loves photography and coaching women in business!
Elaine Wiley
Elaine lives in Los Angeles, California (United States) with her husband and loves traveling, YouTube, and Starbucks!
ISSUE 3
click on the profiles below to read each story
Tiare Tolzmann
Passionate about her Native Hawaiian identity, Tiaré lives in Hawaii (United States) with her husband and family and is very family-oriented, enjoys writing, video games, and reading.
Brittany Rudy-Morris
Living in California (United States) with her boyfriend and family, Brittany is passionate about advocating for scleroderma warriors as well as working with children.
Chanel White
An avid risk-taker who lives life to the fullest, Chanel lives in Washington (United States) with her husband and pets.
Michelle Gray
A lover of all things art-related (and the movie “The Princess Bride”!), Michelle is a single mother with two wonderful children and resides in Louisville, Kentucky (United States).
Paris Hill
Paris is from Cincinnati, Ohio (United States) and loves photography, her family, and learning new things.
Alejandra Serrano
A Disney and sports fan, Alejandra was born and raised in Los Angeles, California (United States) by her single mother, whom Alejandra lives with along with her husband.
Erion Moore
Originally from California, Erion now resides in Oregon (United States) with his service dog, Coco, and pursues various adaptive sports as a former college basketball player.
ISSUE 2
click on the profiles below to read each story
Kimberly Gonzalez
Kimberly lives in Georgia (United States) with her dog, Draco, and enjoys walking, working out, and watching movies.
Amy Gietzen
Amy, a passionate painter and quilter, lives in upstate New York (United States) with her family and friends – people who are everything to her!
Jayda Anastasia
A future nurse practitioner in psychiatry, Jayda from New York (United States) is an avid kayaker who is passionate about health and wellness.
Shannon Hastings
Shannon lives in Fredricksburg, Texas (United States) and is the founder of Camp Diasozo, a retreat that allows children with scleroderma to bond and interact with each other.
Angela Fernandez
Angela, a pre-teen who lives in Los Angeles, California (United States), wants to have a big house, an art gallery to hang her paintings up, and a big kitchen in her house to bake!
Keanna Orlang
Born and raised in New York (United States), Keanna currently lives in Long Island (United States) with her husband, her baby boy, and her French bulldog called Mazi
Cat Davis
An avid pet lover who lives in New York (United States), Cat has two cats and a dog, and loves to listen to podcasts!
Wyatt Wright
Sport-loving Wyatt lives in Kansas (United States) and is a teen who loves to fish, play baseball, and hunt
Macy Phillips
Macy lives in Kansas (United States) and loves to blog, journal, and be with her two dogs, Kane and Chi-Chi.
Jessie Clark
Located in Pennsylvania (United States), seventeen-year-old Jessie is an avid cheerleader and dancer, and she enjoys being with her siblings and family.
Shirley Alvarez
Shirley has always been into creating, whether it is dance, music, fashion, or filmmaking.
Hannah Sportiello
With more than 20 theatre productions under her belt, aspiring actress Hannah is majoring at the University of Wisconsin, Milwaukee (United States) in both acting and sonography.
ISSUE 1
click on the profiles below to read each story
Silvia Petrozza
After turning her narrative around, Silvia now lives as a life coach and advocate in Toronto, Ontario (Canada).
Rachel Lando
A recent anatomy geek also interested in yoga, pilates, reading, and independent film, Rachel lives in Utah (United States) with her husband, daughter, and pup.
Jennifer Addington
Jennifer has lupus and scleroderma and lives near Kansas City in Kansas (United States).
Raele Robison
Raele, a researcher studying swallowing disorders, lives in Florida with plans to move to Madison, Wisconsin (United States).
Christine Haines Greenberg
After growing up in Germany as an army brat, Christine now lives in Richmond, Virginia (United States) as the owner of Urban Set Bride and the Hive Wedding Collective.
Juliana Viscardi
Juliana lives in New York City, New York (United States) as a mother of two.
Tracey De Klerk
Tracey lives in Queenstown, Eastern Cape (South Africa) with her husband Steve and two parrots, Snoopy and DJ.
Tonya Moores
With her three children (16-y/o Makayla, 14-y/o Coadie, and 9-y/o Riley), Tonya lives in Newfoundland (Canada).
Michele Barilla
Living in Southern California (United States), Michele and her husband have a 16-year-old son.
Jovana Placido
Diagnosed with scleroderma at age 14, Jovana now serves as an advocate for the scleroderma community in San Antonio, Texas (United States).
Sandra Nunez
Sandra lives in Florida (United States) as a model and Guardian Ad Litem volunteer while running her blog, “Living La Vida Scleroderma.”