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.
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
12.05.2025 23:55 — 👍 11 🔁 5 💬 1 📌 0
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
20.04.2025 23:13 — 👍 1 🔁 0 💬 0 📌 0
How does anyone think this is okay? To spend money on this study for someone highly unqualified who is already biased.
We have hundreds of studies showing vaccines do not cause autism.
I’m so tired. Science is under attack literally.
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
13.02.2025 16:47 — 👍 1 🔁 0 💬 0 📌 0
Often times rare patients like myself face some extreme health challenges well before getting diagnosed.
It’s rare disease awareness month and I’m trying to raise awareness for others like myself so they get diagnosed faster.
#rarediseaseday #hypophosphatasia #chronicillness
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
04.02.2025 02:55 — 👍 5 🔁 2 💬 1 📌 0Hey! Nice to see another HPPer!
04.02.2025 02:35 — 👍 1 🔁 0 💬 0 📌 0It’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
30.01.2025 16:14 — 👍 3 🔁 0 💬 0 📌 0
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
21.01.2025 16:03 — 👍 0 🔁 0 💬 0 📌 0Thankful for this platform today.
20.01.2025 17:48 — 👍 1 🔁 0 💬 0 📌 0@aaronblocker.com let's try to make #Raresky big before Rare Disease Day on 28th Feb 👌 #RareDisease
15.01.2025 22:37 — 👍 3 🔁 1 💬 0 📌 1
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
14.01.2025 00:18 — 👍 0 🔁 0 💬 0 📌 0
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
31.12.2024 16:07 — 👍 1 🔁 0 💬 0 📌 0
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
28.12.2024 18:57 — 👍 3 🔁 0 💬 0 📌 0
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