Scleroderma: A Generational Challenge
Diseases
Rare Disease
Issues and Challenges
Shannon Montgomery has encountered: Rare / Underserved Disease, Gaslighting, Invisible Illness, Underserved Community
My Story
Hello, my name is Shannon Montgomery.
I’m 53 years old, and I’m living with diffuse systemic scleroderma and dermatomyositis overlap — a rare, progressive autoimmune disease that affects the skin, muscles, circulation, and internal organs.
This disease has tightened my skin and taken away things most people never think twice about.
I lost my teeth and most days,
I am unable to wear my dentures comfortably — not because they broke, but because my mouth has physically become too small to hold them.
There are days when it feels like my face is being pulled backward, as if the skin itself is tightening from behind my head.
But it has not taken my clarity, my resolve, or my voice.
What makes my story especially personal is this:
my grandmother also had scleroderma and died at 54 years old.
And yet, decades later, I still experienced delays, dismissal, and fragmented care — despite advances in medicine, technology, and data.
That’s why I began documenting everything.
I photographed my skin, my nails, my feet, my progression — not to shock, but to create evidence.
To show patterns.
To demonstrate what early warning signs actually look like when they are happening in real time.
What I’ve learned is this:
the signs were there — long before my disease became disabling.
They simply weren’t connected.
And that is what I am trying to change.
I’m not advocating for a new law.
I’m advocating for a smarter system.
One that uses existing data, imaging, and artificial intelligence to flag rare disease patterns earlier — so patients aren’t forced to wait until damage is irreversible to be believed or treated.
I joined the Scleroderma Advocacy Team because patients should not have to become experts just to survive.
Early detection saves mobility.
It saves organs.
And it saves lives.
I didn’t choose this disease.
But I choose to use what I’ve learned — for the next patient, and the next generation.
My suffering must serve a purpose.
And that purpose is change.
Thank you.
My Motivation and Inspiration
We have the ability to help so many patients with new technology by sharing our data with others who can develop additional screening tools such as the use of artificial intelligence.
Share This Story
Get the most from every Story
Find A Compelling Patient Story
Share it on social media.
Share Your Story On Our Network
Share your insights, challenges and what keeps you going.