A Little Reintroduction (and a Big Thank You)
If you’re new here, welcome! I’m so glad you found your way to my little corner of the internet. 🤍
If you’ve been here for a while… thank you for staying. Truly. I haven’t scared you away or bored you yet and that in itself feels like an accomplishment.
This space has grown into something I never could have fully imagined, and lately, I’ve found myself reflecting on what a season of growth this has been. Growth in my health journey, growth in my voice as an advocate, and growth in this community that continues to show up with so much kindness, curiosity, and care.
So, I thought it was time for a little reintroduction.
Hi, I’m Lauren! A chronic illness blogger, writer, patient advocate, and someone navigating life with a connective tissue disorder (hi, Ehlers-Danlos Syndrome), FPIES, Non-Advanced Systemic Mastocytosis, and all of the beautifully complicated layers that come with that (hello, POTS 👋).
I’m also a rare disease legislative advocate, which means I care deeply about not just living with these conditions, but working to change the systems that impact all of us. Because access, awareness, and research shouldn’t be luxuries- they should absolutely be standard.
Outside of advocacy, I’m a Disney-loving, former Cast Member (the magic never leaves you ✨), a paddle boarder when my body allows, a very proud dog mom, and- this feels very important- an Oxford comma enthusiast!
Oh, & I run on caffeine. Maybe too much of it.
This Community Is Growing… and It’s Reaching the World 🌍
One of the most surreal parts of this journey has been watching this community grow.
Just this week, I noticed that my three most recent blog subscribers are from Germany– WHAT. This absolutely blew my mind. The fact that this space is reaching people across the world, connecting us through shared experiences, advocacy, and storytelling… it means more to me than I can put into words.
Wherever you’re reading from, I’m so glad you’re here. 🗺️
10,000 of You on TikTok?! 😭✨
Another moment I’m still processing… we officially hit 10,000 followers on TikTok. (actually 10.1k at the time this is published).
Ten. Thousand. People.
That’s over ten thousand individuals choosing to follow along, learn more about daily life with chronic illness, engage in conversations about invisible illness, and ask how they can help support rare disease research and advocacy. Patients with wild and confusing experiences simply looking for connection with others THAT GET IT… and guys, we’ve created a safe space for that!
10,000… That’s not just a number- that’s impact.
It tells me that people care. That people want to understand. That people are willing to listen, learn, and show up in meaningful ways. And that people truly need to feel connected.
That gives me so much hope. And proves we can’t stop what we’re doing. We have to continue showing up.
Let’s Do More Together 🤝
Questions I get often from you all are:
“How can I help?”
“How can I get involved?”
“Where do I even start to find answers for my questions?”
And I love this. You’ve come to the right place. I can’t claim to know it all- and I absolutely never will. But I can set you in the direction of others that DO KNOW a lot more than I do.
So I want to open up the floor.
For anyone reading this- if you know of:
- Research opportunities
- Volunteer programs
- Advocacy initiatives
- Organizations doing meaningful work in the rare disease or invisible illness space
- Physicians that need recognizing for their INCREDIBLE work and bedside manner
Please share them.
You can:
- Send me a DM
- Email me
- Or drop a comment right here on the blog (feel free to include your contact info if you’re comfortable)
- Let’s continue to celebrate greatness and connect those within our community to opportunities where they can contribute in a way that best serves them on their journey
I would be more than happy to help connect people, amplify opportunities, and continue building something that actually creates change.
Because the truth is- we are so much more powerful when we work together.
From the Bottom of My Heart
Thank you for being here.
Thank you for listening.
Thank you for learning, sharing, and showing up.
Thank you for being comfortable sharing your experiences and asking the hard questions.
This space is what it is because of you.
And I’m really excited to see where we go next 💫
Remember to stay hydrated, be kind to yourself, make wise choices, and try not to perish 🫶
Hi friends! My name is Lauren. Thank you for being here and for making it this far. If you like what I’m doing here and want to support me/the blog – feel welcome to follow along on Instagram or TikTok– where we’re now 10k strong and continuing to grow! I’m focused on my Fundraising Goal of raising $1,500.00 USD for The Ehlers-Danlos Society this month. If you’d like to contribute, please click here. I also accept patient stories, if anyone’s interested in sharing their rare disease experience or looking for a place to share their diagnostic odyssey or promote your blog/business- reach out to me, I’d love to elevate other rare voices. I’m so happy you’ve found your way here and happy you chose to be here for another day. <3 XoXo, Lauren
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