JP Summers

What Does It Mean to Be Proud? Patient advocate Angie Ebba talks about Pride Month and Disability Pride Month and how both have allowed her to gain a supportive community.

This Disability Pride Month, we’re reflecting on what it really means to embrace identity, challenge ableism, and take up space — even in a world that doesn’t always make room.

Read more about why pride matters to our community in this powerful piece:
🔗 creakyjoints.org/about-arthri...

Got questions about your Rheumatoid Factor (RF) test?
Dr. Jeff Curtis breaks down what your RF levels really mean. Whether you're seropositive RA, seronegative RA, or confused by the numbers, this episode will help make sense of it all.
Listen to the full episode: creakyjoints.org/lets-get-per...

RFK Jr. is facing a lawsuit over his COVID-19 vaccine directive — and the future of public health could hang in the balance.
Steven Newmark explains what this legal battle means for vaccine policy, public health, and the law.
🔗 ghlf.org/the-health-a...
#TheHealthAdvocates #VaccinePolicy

Take a breath. Log off. You’re allowed.
#SpoonieLife #RestIsProductive

We're looking for patients living with #lupus #uveitis
#Psoriaticarthritis #Sjögren #chronicheadache #IgG4 to share their stories - some opportunities are paid.
research.net/r/V7GLJ9T

What’s reconciliation? What’s rescission? Why do they matter for your health?

🎧 In the latest #TheHealthAdvocates, Steven Newmark breaks down how Congress uses budget tools to shape healthcare access.

➡️ Listen here: ghlf.org/the-health-a...
#HealthPolicy #PatientVoices #HealthcareAccess

Social Media and Rheumatoid Arthritis: The Good and The Bad Eileen Davidson shares her journey navigating both support and misinformation online while offering tips for finding reliable resources.

“Some people might criticize u for taking #medication or accuse u of complaining about your #illness ..impt not to take those comments to heart — people who lash out like that are likely struggling w their own issues.”: buff.ly/UceEfGV

via @creakyjoints.bsky.social / @chroniceileen.bsky.social
#RA

Navigating Single Motherhood and Rheumatoid Arthritis A single mom shares her journey of raising a child while managing rheumatoid arthritis, highlighting the challenges and silver linings.

“His understanding of #health, #kindness toward those with #disabilities, and willingness to lend a hand are qualities that many #children don’t develop unless they’ve experienced #chronicillness firsthand.": buff.ly/RLmoJbW

from @creakyjoints.bsky.social / @chroniceileen.bsky.social

Federal health agencies face major proposed cuts in the 2026 budget. What’s at stake — and how does this affect chronic illness care?

🎧 New #HealthAdvocates episode with Steven Newmark is out now.
Plus: our new national partnership with Walgreens.
🔗 ghlf.org/the-health-a...

16.5M adults in the U.S. live with atopic dermatitis. Pharmacists like Mallory can help manage symptoms, navigate insurance, and improve quality of life.
🔗 linktr.ee/YourSkinYour...
#AtopicDermatitis #Walgreens #GHLF #YourSkinYourHealth

Evening update: still flaring, still fabulous, still horizontal.

Why LGBTQ+ Representation Matters to Me: Celebrating Diversity and Inclusion in Health Care In honor of LGBTQ+ Pride Month, members of our chronic illness community share why representation of the LGBTQ+ community is crucial for achieving health equity.

LGBTQ+ patients living with chronic illness deserve to see themselves represented—in advocacy, in media, and in medicine.
🌈 Read this powerful reflection on identity, health, and why representation matters:
🔗 ghlf.org/chronic-illn...
#PrideMonth #LGBTQHealth #ChronicIllness

It can take 7–10 years to get diagnosed with hidradenitis suppurativa (HS). Jasmine shares her story and how pharmacists can help with access and support. You’re not alone.
🔗 linktr.ee/YourSkinYour...
#HSawareness #Walgreens #GHLF #YourSkinYourHealth

We went live from the #WorldVaccineCongress to dig into the future of adult immunization in the U.S.—from funding threats and misinformation to coalition-building and access equity.
Tune in for expert insights filmed on-site in Washington, DC!
Watch now: youtu.be/79_TONl67GI
#HealthcareMatters

Psoriasis is more than skin deep. If you're dealing with stubborn flare-ups or uncomfortable skin symptoms, it's time to talk to your doctor.
Learn about treatment options:
insideoutdisease.creakyjoints.org
This post was made possible with support from @amgen.bsky.social #AmgenSponsored

Invisible Illness Patients: You May Need to Dress for Doctor Visits to Match How You Physically Feel Learn more about how you dress for a doctor’s visit may affect the care you receive and the pros and cons of dressing up versus dressing down.

“Sometimes looking dressed is #misinterpreted as feeling well & symptoms are ignored or are seen as less than they are..One male #doctor actually said ‘well, you could do your hair; can’t be that bad.””: buff.ly/3U7HSGp

via @creakyjoints.bsky.social
#NEisvoid #ChronicIllness #spoonie

Living with Generalized Pustular Psoriasis: From stress to flares to mental health, our guests explore why managing GPP requires medical care and emotional support. Listen now: creakyjoints.org/getting-clea...
#psoriasis

🧴 Living with psoriasis? We want to hear from you!
💸 Paid opportunity
🗣️ Your voice, your impact
👉 Take the short survey to see if you're eligible:
www.research.net/r/52H5KKQ?SV
#Psoriasis #PatientAdvocacy #ChronicIllness #PatientVoice

Lupus Help Center Ready to explore clinical trials, ask questions, or hear patient stories? The Lupus Help Center has the support and info you need.

Clinical trials could offer new hope for lupus patients — but we know they can feel overwhelming.
That’s why we created the Lupus Help Center — your go-to resource for learning about clinical studies, hearing real patient stories, and finding support.
Explore more: www.lupushelpcenter.org

GHLF is bringing you coverage from the 2025 World Vaccine Congress! In this first interview, we speak with Dr. Sabra L. Klein, Professor at Johns Hopkins Bloomberg School of Public Health.
For 💉 resources: ghlf.org/issues/vacci...
#WorldVaccineCongress #WomensHealth #Immunology #PublicHealth #GHLF

Doctor Visit Feedback - Just 6 Clicks to Make Your Voice Heard Take this survey powered by surveymonkey.com. Create your own surveys for free.

If you’re living with RA, AS, axSpA, PsA, or GCA, your feedback could help improve doctor visits for everyone.
Take our short survey and you’ll be entered to win one of three $100 gift cards.
Don't wait! The survey closes Sunday, April 27th.
www.research.net/r/2CRFZX3?SV...

🧑‍⚕️ We're recruiting patients for a paid advisory board!
Do you still experience gout flares? Your voice can help improve care for others.
Apply here 👉 www.research.net/r/GOUTADVISOR
#PatientVoice #Gout #ChronicIllness #GoutAwareness

📣@CreakyJoints has just launched The Lupus Help Center!

Have you thought about participating in a #ClinicalTrial?
If you or a loved one lives with #lupus, be sure to click on the link below to see if you pre-qualify.
creakyjoints.org/lupus-help-c...

How to Prepare for Lupus Clinical Trials: Feeling unsure about clinical trials? With the right preparation, you can make informed decisions and have a meaningful experience.
🔗 Explore More: creakyjoints.org/about-arthri...
#LupusWarrior #SupportSystem #ClinicalTrials #LupusAwareness #CreakyJoints

Finding Emotional and Practical Support During Lupus Clinical Trial Emotional and practical support is key for lupus clinical trials. Learn how to prepare, build the right support system, and ask for help.

🌟 Finding Emotional and Practical Support During Lupus Clinical Trials 🌟
A strong support system makes all the difference! Whether it's friends, family, or your health care team, having the right support helps you navigate #lupus clinical trials with confidence.
🔗 creakyjoints.org/about-arthri...

Commentary: Proposed state legislation on 340B drug pricing program won't help Commentary: 340B is a tremendous federal program that ought to be fixed — by the federal government. A state initiative would make things worse.

State legislation won’t fix the 340B program’s flaws. Our co-founder, Louis Tharp discusses why federal reform is essential for transparency and accountability in this article:
www.timesunion.com/opinion/arti...
#340B

What You Need to Know About Clinical Trials Learn about clinical trials, including types, phases, risks, and questions to ask before deciding if a clinical trial is right for you.

Thinking About a Clinical Trial? Here’s What You Need to Know!
Clinical trials are the bridge between lab research & real-world impact, studying the safety & effectiveness of new investigational treatments!
🔗 Dive in! creakyjoints.org/about-arthri...
#Lupus #ClinicalTrials #LupusAwareness