New York City, New York (United States)
Scleroderma Stories Issue 5
Please introduce yourself
My name is Evamarie Gilbes-Cole. I am 53 years old, and I live in New York City with my husband Sean and my son Justin. I’m very close with my immediate family. My family is scattered across the country and internationally, so those that are near are a huge support system for me. I have a lot of forever friends, my “ride and dies,” who have been with me along the journey.
My fellow scleroderma warriors have also become a part of my family! I have had scleroderma for 16 years. I’m a patient advocate and a support group leader, and I just love helping other people.
What led to your scleroderma diagnosis?
What symptoms have you developed since your diagnosis?
What challenges do your symptoms cause?
What treatments have you tried or found helpful?
How do scleroderma-related expenses impact your life?
How has scleroderma impacted your career?
How has scleroderma affected your relationships with friends and family?
What is it like to be a mother with scleroderma?
How do you feel when people tell you that you don’t look sick?
Could you please share more about your connection with the scleroderma community?
What are your interests or hobbies?
Have your daily walks and stair-climbing helped you manage symptoms?
What is your mindset when approaching new things?
What’s something you’ve learned over the years that you wish you had known when you were diagnosed?
What are your goals and dreams for the future?
What kinds of advocacy work are you involved in?
Anything you’d like to share?
Be sure to follow us on Instagram and Facebook (@sclerounited) to see more scleroderma warriors’ journeys in our weekly Sclero Sunday series.
Are you a scleroderma warrior? We’d love to interview you for Scleroderma Stories! Please visit tinyurl.com/share-my-sclero-story or email us at firstname.lastname@example.org