BUFFALO, N.Y. (WKBW) — Niagara Falls, the Electric Tower and the Peace Bridge will all be lit up in teal on June 29, in hopes of raising awareness and starting a conversation about scleroderma.
"Scleroderma is a rare autoimmune disease that has no cure. It's 'sclero', meaning hard, 'derma' meaning skin," said April Roberts, Patient Services Manager for the National Scleroderma Foundation's Tri-State Chapter.
It's a disease where your body produces too much collagen and fibrosis, which can lead to thickening of the skin and in the worst cases, hardening of the internal organs.
"No two people have the same scleroderma, which makes it hard to diagnose, so you can live very well with scleroderma if it is diagnosed properly," said Roberts.
It’s estimated that about 300,000 Americans have scleroderma, according to the National Scleroderma Foundation. It affects women more than men, ages 25-55, and looks different based on your ethnicity.
"Unfortunately it is so rare, the medical community is still learning about it," said Roberts.
When Amy Gietzen of West Seneca was diagnosed at 19, she had to travel to Pittsburgh to hear from a specialist who told her life would never be the same.
"Soon after I started to develop all kinds of problems it was as if once I was diagnosed my body was like “Ok, she knows so lets do our worst,” said Gietzen on her Facebook page, 'Staying Alive with Scleroderma'.
She developed scarring on her lungs, making it hard to breathe. Her skin and body got so stiff she could no longer kneel or make a fist.
"My prognosis has over time become much worse...Now in my life I have resigned with the fact that my disease will not be going anywhere and I have given my life to advocating and educating whomever I can about scleroderma," said Gietzen.
In raising awareness and money, the foundation helps educate doctors, connect new patients to treatment and fund research.
"Saying scleroderma and knowing scleroderma unfortunately the way we know breast cancer, alzheimers disease," said Roberts.