Amy Gietzen from Buffalo New York has been living with Systemic Scleroderma for 18 years. Her insights and wisdom come from living with this chronic condition for half of her life.
Like other autoimmune disorders, systemic scleroderma occurs when the immune system mistakenly attacks the body’s healthy tissues and organs. The word “scleroderma” is Greek for “hard skin” and the condition is characterized by the build-up of scar tissue.
Here’s what Amy had to say:
Paving the way for others
“I am most passionate about my advocacy work for the Scleroderma community and for spreading education and awareness. I was diagnosed at such a young age that it really affected me and I want to make sure that other young adults that are diagnosed have support.”
The road to diagnosis
“I had a lot of stiffness in my joints, my wrists especially. I had inflammation in my fingers, and I had fatigue. I could sleep 8 or 10 hours a night and I’d be consumed with tiredness and just dragging at school and my job. So [the inflammation] really impacted my decision to seek medical professional help and to kind of wonder, ‘Okay this is my body and I know something is going on, but what is it?’”
Help along the way
“My greatest avenue of support is my family: my mom, my dad, my brother, and my sister. I don’t really know what I would do without them. They’ve accepted all of me that is chronically ill and pushed me to be a better person and to take care of myself. [They are there through] my good days, my bad days, and in between. They’re a pillar of strength for me.”
Wisdom for the newly diagnosed
“First of all, it’s okay.
It’s okay to be afraid. It’s okay to be mad. It’s certainly okay to be angry.
All of the feelings that you’re feeling are okay. They’re your feelings and you’re allowed to have them. You’re allowed to be upset. You’re allowed to feel however you need to feel – it’s just what you do after that [that is important].”
Keep on moving
“Living with a chronic illness [isn’t a death sentence]. It doesn’t mean you should lay in bed all day. You just have to figure out what works for you and [how to] reach your goals in a different way. You can still have a full, amazing life.”
Share your story
Amy sent us her story via the Health Stories Project app. Download it today and share your story! You can also join Health Stories Project to hear about more ways to help others with your story.