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@eme_braelyn

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•EDS & co 🦓 🎀

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Different bodies, different stories, different reasons for having an ostomy. Some of us had years to prepare for it, while others had to make the decision quickly. Some of us feel like our ostomy gave us our life back, while others are still figuring out how to live with everything that came with it. There is no one “ostomy experience,” and that’s exactly why I wanted to bring these stories together.

A huge thank you to everyone who shared their photos, stories, and experiences for this post. I know putting something so personal out there isn’t always easy, and I’m so grateful that you trusted me with your stories

Community is such a huge part of navigating life with an ostomy. We learn from each other, answer questions, share the things nobody warned us about, celebrate the good days, and remind each other that the hard days don’t mean we’re doing something wrong. We are stronger together, and none of us should have to figure this out alone

And for those of you without an ostomy, thank you for taking the time to listen and learn. Behind every bag is a person with their own story, challenges, personality, and life outside of their ostomy

Happy Ostomy Awareness Day. Here’s to making these conversations a little more normal, a little less uncomfortable, and a lot more human. And a special shoutout to my friend’s sister (bart38738 on tik tok) for creating the drawings for the people who wanted to participate but weren’t comfortable sharing a photo. I love that there was a way for everyone to be included

A quick note: not everyone who participated is tagged because some accounts couldn’t be found, don’t allow tags, or the apps simply wouldn’t let me tag them

#worldostomyday #ostomyawareness #ostomy #worldostomyday2026 #ostomate

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The final day of EDS and HSD Awareness Month 2026

I first want to start off by saying that I have a normal person illness right now and can’t promise that my thoughts will be very coherent, but I wanted to post something today as I reflect on what life with hEDS has meant for me.

I always felt a bit different than other kids growing up.

How my body reacted to exercise, how often I injured myself, the GI issues I had, and being diagnosed with anxiety at 8 were just a few of the things that left me feeling like I was never quite like everyone else.

This feeling only increased as my health declined and I had to leave school. I felt like I was the only person experiencing what I was going through; all of the pain, nausea, fatigue, and pure exhaustion were mine and mine alone.

The decision I made 7 years ago to create this account to see if I could find just one person who understood led me to finding not only answers, but also some of the best friendships and mentors I never thought I’d find.

#EDSAwarenessMonth #hEDS #ChronicIllness #Disabled #YoureNotAlone

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Ehlers Danlos Syndrome has put us through so much suffering, but it’s also given us each other! From hospital rooms, to online community, I can’t imagine living life without the amazing friends I’ve met because of this condition!

I’m so proud of everything we have all overcome, and I’m so grateful for the beautiful souls that just get it, and bring so much light to the days that feel unbearably hard!🥹🫶🏼

This EDS awareness month, I’m giving myself space to acknowledge the hard, but also celebrating the good!
#ehlersdanlossyndrome #edsawarenessmonth #edsawareness #friendships #onlinefriends

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One of the most valuable things I’ve learned is that when you open up, you give other people permission to do the same.

For so long, chronic illness made me feel disconnected and it wasn’t until I saw other people share their stories so openly that I finally started to feel seen myself.

For Ehlers-Danlos Syndrome Awareness Month and always, I want anyone struggling to know: I believe you. Your pain is real, even when others can’t see it. Keep fighting for yourself, and keep showing up for the people around you too.

Your pain does not need to be visible to be valid. #ehlersdanlossyndromeawarenessmonth

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Surgery has been scheduled. On June 15th my GI tract will be completely changed. I'll be honest, I'm still processing and I'm feeling it in waves. It's hard having to face the reality that you are much sicker than you thought. I'm hopeful that this will help with my symptoms and get me off TPN, but it's still really scary. It's a huge surgery.

I'll be losing at least half my colon, and my intestines are being rearranged. I hope getting the compression fixed will be huge, it's just hard to tell how much my symptoms will improve when I also have such bad dysmotility.

I've had some time prior to this appointment to mentally prepare myself for being told I need an ostomy. Honestly, my lower GI issues have been significant for a long time, and it's hard to open with my loved ones about just how difficult it is for me to have a BM and what I have to do to get it out.

Even though I have to go out of state for my care, at least I was able to meet some people who have become close friends through social media. I'm very grateful to be in such good hands now with Dr. Fowlkes

I'm a fighter. I've been fighting for so long, and I will win

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When everything’s falling apart, and you can’t handle one more thought or interruption or diagnosis, please know I’m in your corner continuing to root for you 🫶🏼

Tagged a few people who immediately came to mind… tag someone you admire or want to show some extra love and support to 🤍

#chronicillnesswarrior #chronicillnesssupport #complexillness #invisibledisability #disabilityadvocate

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I never could have predicted I’d spend my 23rd birthday in the hospital recovering from the biggest surgery of my life.

It was a surprisingly happy day, filled with so many visits from friends and staff, the most thoughtful gifts, and improvements with my health that made it such a special day!

Meeting others who are going through similar health struggles is a feeling I can’t explain. Just having people to talk to that can relate to your struggles makes you feel so much less alone!

Some days I honestly can’t believe that I made it another year, and for that I’m so grateful! I will never take another day for granted after all I’ve survived.

Thank you to everyone that made my birthday so special, and for all of the amazing people that made the other days of my long hospital stay so much better. I will never forget the amazing staff that took care of me, and the amazing friends that I met🥹🩷

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Still processing the incredible experience of attending the MIND Conference at MUSC today…an entire day devoted to Ehlers-Danlos Syndrome (EDS), featuring 10+ leading experts across so many fields: surgeons, physical therapists, nurses, psychiatrists, scientists, geneticists, GI docs, orthopedists, and more.

The screening of the @complicatedthemovie left the entire room in tears; it was gut-wrenching and validating all at once. As someone who has lived through so many of the failures the film highlighted, seeing our stories told with such raw honesty was powerful beyond words.

I left the day filled with something I don’t always feel after medical events: hope

Hope thanks to Dr. Maitland and her vision as the new director of the EDS Center. Hope from the research being done by the Norris Lab. Hope from the fact that MUSC opened this space not just for medical professionals, but for patients, too.

I especially enjoyed Dr. Grubic’s talk on G-POEM surgery for gastroparesis (most of you know he changed my life with that surgery) and for Dr. Wexler’s deep dive into hormonal dysfunction and neuroendocrine issues in EDS.

There is real momentum here, and I’m grateful to have been there today.

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my visit to the norris lab 🥼 🦓
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Summer 2019 – the summer before my EDS diagnosis – was the first time I heard of the Norris Lab and the hEDS research they were doing. It was a time in my life where, for the first time in 4 years, my brain was beginning to have room for thoughts other than pure survival. Little did I know where that little spark of interest would lead me.
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I wrote this on my story the other day, but I feel like it honestly it’s the best I’ve been able to verbalize how I’ve been feeling:
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“It has honestly been an unforgettable, amazing week that I still don’t quite believe happened.
After following the Norris Lab for 5 years, a chance meeting on a bus truly felt kismet.
Life has screwed me over in the past so often that my brain doesn’t let me think that good things can happen to me. I kept thinking I would never hear back, that I would never get a response, that plans would fall through, or that my body would overrule my wants yet again.
But here I am - thanks to the Norris Lab’s Visiting Scholars Program - in South Carolina having just spent 3 days in the lab that gave me the hope that I would one day be healthy enough to go back to school and live a life I was proud of.”
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Being in the room where the science happens helped to confirm to me that I am on the right path. There is so much we don’t know, so much we don’t understand, and so many questions left to be answered about hEDS and its related comorbidities. I literally said to one of my professors on Friday that I want to get my grubby little hands in on it all, and, honestly, I couldn’t have said it better!
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Thank you to everyone at the Norris Lab for letting me peek into their work for a few days, especially Cortney, Chip, Molly, Amy, and Victoria who were some of the leaders that led me through it all ♥️
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#EDS #EhlersDanlosSyndrome #InvisibleDisability #Spoonie #POTS #PosturalOrthostaticTachycardiaSyndrome #ChronicIllness #InvisibleIllness #HypermobileEDS #Hypermobility #Science #Research #Zebra

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Prom Photoshoot🎀📸

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Hey!! We’re looking for pup models to wear our gear! You’ll get posted to our main account which has over 740k+ followers!! Just message us “Hi” to @thepackunleashed now 🙂 Can’t wait to hear from you!!

Message us @thepackunleashed (not directly here) and Lillie, our rep, will get back to you ASAP! 🙂

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toned down blonde✂️✨
•message to book
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•#brondehair #brondebalayage #toneddownhair #redken #hairinspo #lowlights #stgeorgesc #southernjuleshairsalon

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