Bibbidi Bobbidi Bendy

Two and a hald years since my last hospital stay (minus outpatient procedures).
One year since diagnosis.

So much to reflect on in the last year. Where do I start?

Fifteen months ago, I walked into a JW Marriott lobby, preparing to check in, carrying confusion, pain, and decades of unanswered questions. I walked out carrying words that changed my life.

I learned that the physical therapy of my childhood wasn’t random. The dehydration, GI bleeding, and fatigue weren’t isolated. The endless popping of my shoulder and finger joints wasn’t me being “anxious” or having a lack of discipline. The consistently inconsistent reactions to food that sometimes were safe, other times not so much, were my body whispering the truth: something deeper is wrong.

And then I heard a line that split my world open:

“If your issues aren’t connected, the issue is likely in your connective tissues.” – Dr. Anne Maitland

Hypermobility. The word hung in the air, foreign and familiar at the same time. Am I flexible? Yes. Always have been. I excelled in gymnastics, cheer, dance… you name it. I loved yoga, and I loved conditioning more than the actual sport. Party tricks? Sure. My body is full of them. But how is that related to my GI bleeding whenever I eat? What had been an occasional bout of stomach bleeding that would occur from time to time became incessant for several months straight. I had no answers. But a primary doctor recommended this medical conference for me and told me to go with all of my lab work and just ask around.

In the middle of one of the sessions, one of the doctors at the conference, Dr. Anne Maitland, made a comment referencing some questions I asked about gastrointestinal issues and asked me what I was doing to address my GI + hypermobility symptoms. Looking dumbfounded, I told her, I’m flexible, but what does that have to do with my food allergies, intolerances, and severe constipation? How is that related?

She told me to mention Ehlers-Danlos Syndrome and hypermobility to my practitioner back home, and to stick around after the session if I had questions.

And boy, did I have questions.
I asked some preliminary questions to Dr. Maitland, right after, and while looking over my notes later that day, I met the woman who would soon change my life, though I didn’t know it yet.

This stranger (a medical doctor who specializes in pediatrics) at my table became what I would describe as my lifeline. We spoke for over four hours: laughter, tears, stories tumbling out like puzzle pieces finding their place, and one-liners from her brother-in-law sitting nearby.

What an experience.

Her twin sister shared from her own journey what had helped her neurologically and physically. She gave me tips on exercises that improved her symptoms. Taught me about body-mind connnection.

And for the first time, I felt seen.

I don’t know how to truly share just how monumental this was in my life.

Like a nerd without any ability to pick up on social cues, I fumbled through my medical binder with notes, lab work, a list of idiopathic diagnoses, unexplained symptoms, chart notes from hospital stays, and images from endoscopies and colonoscopies. As I frantically tried to find a clear piece of paper to write every single word down… she reminded me she wasn’t in a rush and had the time to repeat whatever I needed repeated.

She gave me language. Vocabulary. Words that carved a path connecting all of the years of silence and dismissal.
I shared that I’d been tested for celiac 17 times, and that a gluten-free diet only worked sometimes. I told her about every stomach biopsy, breath test, blood test, and stool sample.

She listened to every bit of it. But more than just listening, she shared that some of my experiences sounded similar to hers growing up and in college.

I don’t know how to thank her. I don’t know how to credit her. I don’t even know how to explain or put into words just how much those 4+ hours meant to me.

Because of her, I found treatments that steadied me- treatments that stabilized the most uncontrollable symptoms.

Because of her, I found a doctor who understood. Because of her, I was able to tell my former PCM, who blamed all of my symptoms on my weight and anxiety, that no, there are actual tests to run and labs to send for that will prove this isn’t due to my weight and isn’t just in my head.

Because of her, I finally had a diagnosis.

There is no cure.
I am rare. Genetically, I have a lot mutations and variants that aren’t typical. But I can live a full life.

I have a name. My symptoms have a name.

And a name is power.

It means proof. It means I’m not lazy, not dramatic, not “always sick with something.”

It means I am real. It means there are others like me out there.

As a child and in college, my survival looked like really overdoing it on caffeine to stay upright, to stay focused; movie theater popcorn to not feel faint; drinking only liquids some days and avoiding solid food until I had to eat in front of family for meals to quiet the GI bleeding; and trying every “diet” to see if one would help ease my stomach pain (paleo, vegan, vegitarrean, GF, carnivore, you name it!. People laughed, rolled their eyes, and dismissed me.

But my body knew. I didn’t have the words to use, or how to describe what I was going through.

But one evening, in Indianapolis, Dr. Sarah Cohen Solomon gave me hope. She game me her time, the vocabulary, a list of tests to request, treatments to suggest, along with questions to ask my primary… just to get me started on the right path.

I don’t know how to thank her. Or how to pass it on. But I know this:

I will spend the rest of my life trying.

If you’ve ever had a moment where a medical professional truly saw you, share it. Someone out there needs to hear it. There ARE providers that care. Don’t give up hope.

XX, Lauren

Today, I had the privilege of meeting with my mentor for the first time—through the Rare Disease Legislative Advocates Mentorship Program. This initiative is put together by the EveryLife Foundation.

Our meeting stirred something powerful within me. I’ve been brewing. I’ve been trying to find the push to begin my next passion project—and our conversation wasn’t just insightful; it was a reminder that dreams are worth pursuing, especially when they’re rooted in purpose—so that is exactly what I’m doing. I’m going full send into this project.

My mentor encouraged me to take actionable steps to shape this blog into a trusted resource for patients & families navigating rare & undiagnosed diseases. Her words reminded me—this doesn’t just have to be a dream.

One thing she said that really stuck with me:

“We’ll be working together for 12 months—so let’s start by imagining what this project could look like in one year—what do you want to see come out of this?”

Thoughts have been dancing in my mind ever since.

Here’s what I see:

A space that uplifts & amplifies the voices of rare & undiagnosed disease warriors—patients, parents, caregivers, siblings, & advocates—who long for connection, understanding, & resources.

A place to tell their stories—in their own words.

A hub that not only validates their experiences but connects them to the tools, communities, & support they may not have even known existed.

A place where readers can resonate with the stories they read & find useful links, therapies, & diagnosis codes that can help them communicate with their providers on their diagnostic odysseys in hopes of finding answers.

In so many ways, this isn’t a new dream—my dream is simply taking a new form.

For the past decade, I’ve built my corporate & professional career around helping others. Connecting others.

Whether it was moderating & facilitating employee resource groups, designing personal & professional development sessions, or working one-on-one with colleagues to navigate their goals—I’ve always found joy in asking:

“What do you need, where do you want to be—& how can I help you get there?”

I was especially proud to support DEIA efforts—leading monthly programming & creating safe spaces where people could be seen, heard, & supported. That role gave me a front-row seat to the power of connection & the life-changing impact of access to the right resource at the right time.

Access. Means. Everything.

Connection. Means. Everything.

Now, I get to do that same work in a space that feels incredibly personal.

I’m still building, dreaming, & sketching what this platform will ultimately become—but I know one thing for sure: this will be a blog built with heart. With love. With soul.

By someone in it—not just for rare disease patients, but for anyone connected to the rare disease community.

This is for advocacy, connection, storytelling, & hope.

If you or someone you love is living with a rare (or undiagnosed) condition, I would be honored to help share your story.

Whether it’s through a video call, a written piece, or just a conversation—we’re stronger together.

Your voice belongs here.

You belong here.

More to come soon, friends. & from the bottom of my heart—thank you for believing in this with me. 💙

— Lauren

Today I spent some time focusing on how to condense my most recent poem to be within admissible guidelines for an artist competition.

The Every Life Foundation hosts an artistry contest for patients and families of those with rare diseases. Applicants can submit visual art, music, poetry, and more.

I was absolutely wowed by the artwork I saw presented in DC in February when at the Rare Artsist Reception. At the end of Rare Disease Week, the Every Life Foundation hosted a reception to conclude all of the advocacy work we did and pay tribute to the artists that were nominated for awards. Every piece was stunning. I was exceptionally impacted by the vast range of ages that participated.

A few months later, while I was finishing up a course with RDLA (Rare Disease Legislative Advocates) with their Rare Disease Learning platform, I was told that Rare Artist was open for submissions again and became really excited. Maybe something I’ve done could help promote the advocacy work we need more eyes on in DC?

I submitted one painting- in which I titled May She Have Peace (the main photo you’ll see on my last post) which is an attempt at a self portrait of myself mid-treatment. I’m currently a participant in a clinical trial for a group of researchers that are hoping to find the first FDA approved treatment for symptom management in patients like me.

I’ve learned a lot about the vagus nerve and the autonomic nervous system. It’s interesting to see how much overlaps in patients with Ehlers – Danlos Syndrome. If you think a deep dive into all that I’m learning in my trial would be an interesting post, let me know in the comments below, I can definitely share my thoughts and experience as a patient in this study.

The Rare Artist competition allows community members to submit more than one submission (two max) but only one can be finalist. I decided to submit my artwork and poem , but submit my artwork as a separate submission and an accompanying illustration for my poem. I think they fit together really nicely.

I had to condense my poem down to 300 words or less, so I decided to submit an adapted excerpt. I think it still holds true to my original piece (but I still love the original more).

Here’s the adapted excerpt. Let me know if you like the original or condensed version more!

While I Wait for Relief by Lauren Hand (excerpt)

While I wait for relief, I create.
To give it a name.
Doctors say:
“Lose some weight.”
“Wait! you’ve lost a lot… are you okay?”
So I give them my tissue—
to rule out every possible issue.
So many tests.
The nurse leans in:
“Do you have someone to drive you home?
You really shouldn’t have done this all
alone.”
As if I chose
to give away 32 tubes just today.
“Your labs look clear.
Have you followed up with psych?
Maybe give that a try.
Pain like this is often… in the mind.”
But the next day—
ER – I’m in decline.
Finally, someone believes what I’ve said.
now that I’m here, in this hospital bed.
While I wait for relief–
There’s something new.
“There are no guaranteesbut researchers are learning
a lot about you.”
While I wait for reliefI comply.
I plug in.
-deep breathEven if I don’t find healingthis’ll help the next.
While I wait for relief, I show up.
I speak.
I create.
I ache.
Maybe I won’t be the one who’s saved,
but the one who comes next, her path will
be paved.
May she live long and pain-free.
…laugh without worry; breathe deeply and
without fear.
May she never ask,
“Please, don’t make me laugh, dear.”
May she never look at old photos
and miss the flair
she once had for life—
before “flare” meant pain.
Before “flare” became life.
May she never worry if she’s believed.
May she know peace.
These are my prayers—
While I wait for relief.

thank you 🙏