Thank you for visiting my personal fundraising page to support this Stepping Out to Cure Scleroderma event!
Your support means so much. Donating through this site is quick, easy, and secure, and it’s the most effective way to help me raise funds that directly support the National Scleroderma Foundation’s mission to advance medical research, promote disease awareness, and provide support and education to people with scleroderma, their families, and support networks. To make a donation, simply click “Donate” and complete the form.Want to get more involved? You can also register and join my team to fundraise alongside me!
I truly appreciate your generosity and encouragement. Please consider sharing this page with friends and family who might also want to make a difference.
Together, we can raise awareness, support those living with scleroderma, and bring us one step closer to finding a cure.
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My Updates
Living life with Scleroderma
Sunday 26th AprOne thing people don’t always realize about scleroderma is that it’s not just one doctor, one symptom, or one simple treatment plan.
It’s a whole team.
Managing this disease means juggling appointments with multiple specialists—each one focusing on a different part of what scleroderma affects. Rheumatology, pulmonology, cardiology, gastroenterology… and that’s just part of it. Because this disease doesn’t stay in one lane—it impacts so many systems in the body.
What that looks like in real life is constant appointments, tests, medications, follow-ups, and trying to keep everything straight while also just… living life.
It’s exhausting in ways that are hard to explain. Not just physically, but mentally too. Advocating for yourself, coordinating care, processing new information—it never really shuts off.
And on top of that, you’re still expected to show up for your everyday responsibilities like everything is normal.
But this is my normal now.
I share this because awareness matters. Scleroderma is complex, and the reality of living with it goes far beyond what people see on the surface.
It takes a team of doctors—but it also takes strength, patience, and a whole lot of resilience every single day.
If you know someone living with a chronic illness like this, check in on them. Support doesn’t have to be big to mean something.
And if you’re in this fight too—you’re not alone 💙
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When My Body Turned Against Me: Living with CREST Syndrome
Thursday 23rd AprI didn’t get diagnosed overnight.
It was a slow unraveling.
At first, it was little things—things that were easy to brush off or explain away. But over time, those “little things” started stacking up. My body felt different. Unpredictable. Like something was quietly going wrong beneath the surface, and no one could quite put a finger on it… including me.
There’s a certain kind of exhaustion that comes from not being believed—or worse, not even understanding yourself what’s happening. You start questioning your own body. Your own reality.
And then one day, it finally had a name: CREST syndrome.
A form of scleroderma.
A rare autoimmune disease.
A lifelong diagnosis.
I wish I could say that getting answers made everything better. In some ways, it did. It gave me validation. It told me I wasn’t imagining things.
But it also hit me with a truth I couldn’t ignore—this isn’t something that goes away.
This is something I carry every single day.
CREST syndrome doesn’t just affect one part of you. It touches everything. It changes how your body functions, how you feel, how you move through the world. It brings pain, fatigue, and a level of unpredictability that makes it hard to plan even the simplest things.
Some days, I look okay on the outside—but inside, it’s a completely different story.
There are days my body feels like it’s working against me. Days when getting out of bed takes everything I have. Days where the energy just isn’t there, no matter how much I want it to be.
And the hardest part? Most people will never fully see it.
Chronic illness can be invisible, but it is never silent to the person living with it.
There’s grief in this journey. Real grief.
Grief for the life I thought I’d have.
Grief for the version of me that didn’t have to think about medications, infusions, symptoms, or limitations.
Grief for the ease that used to exist in my body.
But there’s also something else here—something that keeps me going.
Because even in the hardest moments, I’m still here.
Still fighting.
Still showing up.
Still trying to turn something painful into something meaningful.
That’s why June 7th matters so much to me.
On that day, I’ll be walking in the Scleroderma Walk at the Detroit Zoo. And I won’t lie—just showing up and walking is something I don’t take for granted anymore. This body has been through a lot. There are days it feels like it’s working against me… but that day, I’m choosing to move forward anyway.
Every step I take is for awareness.
For research.
For better treatments.
For people like me who are living this reality every single day.
I’m walking because this disease deserves more attention than it gets. I’m walking because there needs to be more answers, more understanding, and one day—a cure.
If you’ve read this far, thank you for seeing me—for really seeing what this looks like behind the scenes.
If you’re able to support this cause through a donation, it would mean more than I can put into words. And if you’re local, I would truly love for you to join me and walk alongside me that day. Support doesn’t always have to be financial—sometimes just not walking alone means everything.
Because this is more than a diagnosis.
It’s a daily battle.
And on June 7th, I’m taking that battle and turning it into something bigger than me.
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I can't walk with you in person but I will be there in spirit. May the Joy of the Lord be your Strength.