Tough day for a lot of reasons. So many will be hurt by the legislation that was passed. Especially the chronic illness and rare communities but also those who rely on food assistance. A sad day in this country.

As a GI Psychologist I talk w/ patients w/ IBD about stigma. Healing comes from patients learning that they aren't alone. The Crohn's and Colitis Foundation provides many support resources. Take Steps helps fund these amazing programs for patients w/ IBD. Donate below. @crohnscolitisfdn.bsky.social

So much to share from DDW2025 but here’s a couple photos in the meantime. So many friends and patients making themselves known at the conference is humbling and powerful to see. Then catching up with friends and colleagues!

Yesterday was day one of Digestive Disease Week! I am here in San Diego reporting from the conference as a patient. Excited for day 2 and will post some of my highlights from Day 1. #IBD #GiSky #DDW2025

Recovering from my 28th surgery related to my rare disease. Ice cream always helps the recovery. #rare #surgery #raresky

It’s absolutely insane that RFK Jr hired David Geier to perform the autism and vaccine study because -David Geier has no medical degree just a bachelors degree - He harmfully injected autistic kids with puberty blockers had to pay $10,000 He’s a known anti-vaxxer..

Just a reminder: Autism isn’t a disease. There is no “epidemic” of autism. We are better at recognizing and diagnosing it. RFK Jr doesn’t have a clue what he’s talking about and his take on autism is disgusting.

A sad day for science and healthcare in this country when a known anti-vaccine lawyer is confirmed to the nations top health position. #science #vaccineswork #sciencesky

I was 20 years old when I had my first two hip replacements. I was 24 when I had my 3rd and 4th hip replacements. I was 25 when I was finally diagnosed with an ultra-rare genetic metabolic bone disease called Hypophosphatasia. #rare #raresky #rarediseasemonth

This is wildly unacceptable. “Systemic” is a flaggable offense as is “women”. If you study systemic #inflammation in men and #women? Any study on women’s health?🚨✂️ #NSF #savescience

It’s okay to question science—critical thinking is essential. But dismissing the consensus of 99.9% of scientists when you have no background in the field isn’t skepticism; it’s arrogance. #science

I think some people hear “grants” and think that without them, scientists and government workers just have less stuff to play with at work. But grants fund salaries for students, academics, researchers, and people who work in all areas of public service. “Pausing” grants means people don’t eat.

Last week I was appointed as the Executive Director of the Mississippi Rare Disease Advisory Council. Extremely humbled and honored to be asked to lead this council where we will work to change the landscape for patients affected by rare diseases in our state. #raresky #raredisease #rare

February is rare disease month and February 28th is rare disease day! For those unaware, I live with an ultra rare genetic metabolic bone disease called Hypophosphatasia. Where are all my rare disease friends at? #rare #raresky

How the world feels right now with all these decisions being made and the disregard for science and the mountains of scientific evidence we have for things like vaccines. #science

Thankful for this platform today.

@aaronblocker.com let's try to make #Raresky big before Rare Disease Day on 28th Feb 👌 #RareDisease

Spent the weekend in Chicago working on a really cool advocacy project related to gastrointestinal health. Always cool to talk about my Crohn’s disease story. #gisky #IBD #crohnsdisease

Got a good report from my colonoscopy/EGD. Mild gastritis and esophagitis that they biopsied to rule out H. Pylori. Otherwise is Crohn’s related but mild. Colon/ileum look great! Happy to still be in remission. Will have a pillcam in the coming months to look at my small bowel further #gisky #ibd

It’s colonoscopy and EGD time. Hoping for a good report on my Crohn’s Disease

It’s colonoscopy prep day! This is my second time using Sutab, the pill prep vs oral solution and I’m a big fan. The oral prep always made me vomit. So I’m thankful for this option. #IBD #colonoscopy #crohnsdisease

Was scheduled for colonoscopy/EGD on Monday but due to some insurance stuff it was either move to sometime in January or move to Tuesday NYE with a GI who isn’t my normal GI, I chose Tuesday since my accumulations are met. Just too much junk we have to deal with. #IBD #crohnsdisease

Happy to share that I have been appointed to Mississippis Rare Disease Advisory Council as the rare disease patient! My confirmation by the board is in a couple of weeks. Excited to get to work and make some change for rare disease patients in Mississippi. #raredisease #rare

Going through the diagnostic odyssey/journey with one of my kids and it’s much worse than going through my own diagnostic journey. My own journey was super hard but having to navigate it with my child is just even harder. #caregiver #parenting

It’s Crohn’s and Colitis Awareness Week! It’s been 15 years since I was diagnosed with Crohn’s Disease which changed my life in more ways than I can count. Excited to raise awareness this week. #IBD #GISky #Crohnsdisease

Made it to Nashville last night. Seeing my rare disease doctor at Vanderbilt this morning for my yearly evaluation and then driving back home. Very short turn around on this one but have to see my doctor and this is part of it. #raredisease #raresky #hypophosphatasia

Later today I make my yearly trek to Nashville to see my rare disease doctor. The reality of my rare disease Hypophosphatasia is there isn’t anyone in my area who treats the disease so I travel 6 hours 1-2 times a year for treatment. #raresky #raredisease #hypophosphatasia

If you or your children haven’t received your flu vaccines this year yet, it’s not too late! Signed, A pediatrician who cared for an unvaccinated child who died from the flu and would like to never experience that avoidable tragedy again.

Between January-May this year I lost 30+ pounds without trying. GI docs been stressed. Labs are good, Humira levels good. CT was okay, nothing major. Waiting for scopes and Pillcam in a few weeks. I had gained some weight over the last few years due to meds and hated how I looked.. #IBD

First post on Bluesky, let’s share some websites offering many free illustrations for scientific figures 🖼️ 🧪 🌍 : scidraw.io bioart.niaid.nih.gov www.phylopic.org More well known but very nice though: www.freepik.com

A couple of years ago my rare disease diagnosis story was featured in a @washingtonpost.com article. I diagnosed myself with an ultra rare disease and happened to be right. #raredisease #hypophosphatasia #advocacy www.washingtonpost.com/health/2022/...

Here’s the thing. When it comes to my health, I’m not afraid to push back at my care team and get a second opinion. Also, any doctor who pushes back about you getting a second opinion means you should get that second opinion. #health #chronicillness

I’m having my colonoscopy and EGD on the last day of 2024. Good way to ring in the new year you know. #IBD #crohns #scope

I don’t know who needs to hear this but vaccines don’t cause autism. #science #vaccines

If there’s one thing about me it’s that I’m addicted to coffee and I’m not ashamed #cofee

I’m a big fan of science. I have a Masters in Biomedical research. I spent time in a vaccine research lab as well as studying the gut microbiome in #IBD I now work as a population health data and analytics consultant for a large hospital system here in the south. #dataanalytics #microbiome

Crazy to see all the growth here! What’s up #raredisease community let’s connect! I live with an ultra-rare bone disease called #hypophosphatasia and I’ve had 27 surgeries related to my disease. It has pushed me further than I thought anything could. The rare community is resilient #rare

I’ve been living with Crohn’s Disease for 15 years and advocating for 14 of those years. I love the #IBD community and friends/family I’ve made a long the way. Looking forward to building a community here on BlueSky. #crohns #uc #chronicillness

Hello BlueSky! I’m Aaron. Came over from Twitter. I live with #CrohnsDisease and an ultra-rare genetic bone disease called #hypophosphatasia. I have been advocating for these diseases for a long time. I also have a background in #science and love to talk about that! #chronicillness

Hello BlueSky! I’m Aaron. Came over from Twitter. I live with #CrohnsDisease and an ultra-rare genetic bone disease called #hypophosphatasia. I have been advocating for these diseases for a long time. I also have a background in #science and love to talk about that! #chronicillness

Getting settled in over here. Looking for the #chronicillness and #raredisease community. Where yall at!

I’m tired of all the crazy news.

What’s up BlueSky. Coming over from Twitter. I talk about #science #chronicillness #raredisease and more!