Seth D. Ginsberg

Seth D. Ginsberg: Health advocate. New Parent.

[Seth D. Ginsberg @SethSaidSo]

Follow me on BlueSky where we can live safer, more meaningful social media lives: https://t.co/LS65nAxbfp

[CreakyJoints.org @CreakyJoints]

When Graves’ disease starts affecting more than your physical health, it’s time to pay attention to your mental health too. 💙
Living with ongoing symptoms, treatment setbacks, and uncertainty can lead to anxiety, depression, frustration, or emotional exhaustion. If you’re struggling, know that you’re not alone—and you don’t have to push through it by yourself.
#GravesDisease #ThyroidHealth #Hyperthyroidism #AutoimmuneDisease

[CreakyJoints.org @CreakyJoints]

Every breakthrough starts with a question.

Every study starts with a hypothesis.

Every treatment starts with years of research.

And every step forward starts with patients willing to share their experiences.

As #EULAR2026 gets underway in London, we’re reminded that scientific progress and patient voices move forward together.

That’s how better tomorrows are built.

[CreakyJoints.org @CreakyJoints]

👀 Spotted at #EULAR2026

Patient advocacy in action.

@GHLForg President & Co-Founder @SethSaidSo and Chief Policy Officer @StevenNewmark are in London this week helping bring the patient perspective into conversations about research, treatment access, and healthcare policy.

[CreakyJoints.org @CreakyJoints]

But arthritis doesn't end tomorrow.

Tomorrow, millions of people will still wake up managing pain, fatigue, stiffness, flares, medications, doctor's appointments, uncertainty, and symptoms that many people never see.

A few reminders as we close out the month:

🔹 Arthritis is not "just getting older."
More than 100 diseases fall under the arthritis umbrella, and many are autoimmune.
🔹 Arthritis can affect anyone.
Kids. Teenagers. Young adults. Parents. Grandparents.

🔹 Many people living with arthritis look perfectly fine.
What you don't see are the flares, exhaustion, uncertainty, medications, appointments, and debilitating pain.
🔹 You do not need to earn rest.
Resting isn't quitting. It's healthcare.

🔹 You are allowed to cancel plans, set boundaries, ask for help, use mobility aids, take your medication, get a second opinion, and protect your energy—without guilt.
🔹 Instead of saying:
"You're too young for arthritis."
"You don't look sick."

Try:
"How can I support you?"
Awareness may last a month.

Advocacy, education, and support must continue all year long.

#ArthritisAwarenessMonth #ArthritisAwareness #ChronicPain #InvisibleIllness #PatientAdvocacy

[CreakyJoints.org @CreakyJoints]

If you live with arthritis, inflammation may be doing more than causing occasional aches and pains.

Chronic inflammation can contribute to joint pain, swelling, stiffness, fatigue, and even long-term joint damage. Understanding what’s happening inside your body is an important step toward managing your condition and advocating for your health.

Learn:
• What inflammation actually is
• Why it happens in arthritis
• How it affects the body
• Why controlling inflammation matters

Read the full article here:
https://t.co/NQjIrg8R86

#ArthritisAwarenessMonth #ArthritisAwareness #Inflammation #AutoimmuneDisease

[Seth D. Ginsberg @SethSaidSo]

@Schneider_CM A colonoscopy would be more entertaining

[CreakyJoints.org @CreakyJoints]

Rev. @AlSharpton is right: #340B was created as a lifeline for vulnerable patients — but concerns continue to grow around transparency and whether the program is fully serving its intended purpose. New York must say NO to S.1913 and prioritize accountability to keep patients at the center.

Read more: https://t.co/oUyk6nHgkP

@AndreaSCousins @NYSenDems @NYSA_Majority @NYSenatorRivera @AmyPaulin @StevenNewmark

[NBC News @NBCNews]

No child deaths have been definitively linked to Covid vaccines, according to a report from the FDA that was quietly made public. https://t.co/N99uOgFTQ9

[CreakyJoints.org @CreakyJoints]

Feeling like your gout is in control instead of you? You’re not alone. If you’re experiencing frequent flares, have high uric acid levels despite treatment, or have developed tophi, it may be a sign that your gout is not well controlled. Over time, uncontrolled gout can worsen, but there are steps you can take. Talk with your doctor about your symptoms, treatment goals, and lowering uric acid levels to help reduce flares and protect your joints.
Learn more: https://t.co/p9UmhgMH8Z
#GoutAwarenessDay #GoutAwareness #GoutEducation

[CreakyJoints.org @CreakyJoints]

Many people think gout only matters during a flare — but gout can continue affecting the body even after symptoms improve. Uric acid crystals may continue building up over time, which is why early education, ongoing management, and informed care matter.

This #GoutAwarenessDay, we’re encouraging our community to learn more about gout, ask questions, and explore treatment options that may help reduce future flares and improve quality of life.

📖 Download the Interactive Guide to Gout here:
https://t.co/gneuuR6Usy
#GoutAwareness #GoutAwarenessDay #GoutEducation #Arthritis #ChronicIllness

[CreakyJoints.org @CreakyJoints]

Happy 20th anniversary of Gout Awareness Day!

Which means it's about time we started talking about gout like the serious disease it actually is.

Because gout is not just “rich guy arthritis.”
It’s not a punchline.
It’s not a lifestyle meme.
And it’s definitely not just “drink less beer and you’ll be fine.”

Gout is a chronic inflammatory disease that can be debilitating, isolating, painful, and deeply misunderstood.

It affects sleep.
Work.
Relationships.
Mental health.
Mobility.
Confidence.

And for many people, it comes with guilt and stigma layered on top of the pain itself.

I’ve met patients who hid their flares from coworkers because they were embarrassed. People who thought they somehow “caused” their disease. Patients who waited years for proper treatment because even healthcare professionals sometimes minimize gout.

That has to change.

The good news: We actually know a lot more about gout now than we did 20 years ago.

There are better treatments with much better treatment guidelines.
Better understanding of uric acid management.
Better recognition of the cardiovascular and kidney connections.
And finally, a growing realization that patients deserve support, education, and long-term care plans, not just a prescription tossed across the room during a flare.

At @GHLForg and CreakyJoints, we built 'The Interactive Gout Guide' because patients deserve something practical, useful, and human.

Not fear.
Not shame.
Not a 47-page PDF written like a tax document.
Just real help with helpful navigation.

If you live with gout, love someone with gout, treat gout, research gout, or still secretly think gout only affects Medieval Kings, please spend a few minutes with this resource:
https://t.co/gneuuR6Usy
- @SethSaidSo

#GoutAwarenessDay #Gout #Health

[CreakyJoints.org @CreakyJoints]

Gout care starts with understanding your options. In this video, Genene shares why knowing about the ACR Gout Guidelines can help patients, families, and healthcare teams navigate diagnosis and treatment. Learn more: https://t.co/ZfCUDrVXaw
#GoutAwarenessDay #Gout #Health

[CreakyJoints.org @CreakyJoints]

Living with IBD can mean planning your day around symptoms, scanning every room for a bathroom, navigating flares, pushing through fatigue, canceling plans, and carrying invisible struggles others may never see.

Crohn’s disease and ulcerative colitis are more than digestive conditions — they can affect mental health, sleep, relationships, work, and quality of life.

An estimated 2.4–3.1 million people in the U.S. are living with IBD.

To everyone living with IBD: your experience matters, your challenges are real, and you are not alone 💜

#WorldIBDDay #IBD #CrohnsDisease #UlcerativeColitis #InvisibleIllness

[CreakyJoints.org @CreakyJoints]

If you've noticed wounds that won't stop draining — you're not alone, and it's not your fault. Ruptured abscesses are a hallmark sign of Hidradenitis Suppurativa (HS), a chronic skin condition that's often misdiagnosed for years. Could this be HS? Take our free check at the link 👉 https://t.co/8zIkxhh1jw
#HidradenitisSuppurativa #HSAwareness #ChronicSkinCondition #SkincareHealth #HS

[CreakyJoints.org @CreakyJoints]

Missed our Navigating PMR webinar? The replay is now available!
Watch on YouTube to learn more about how PMR is diagnosed, current treatment approaches, and what to do when flares happen.
Whether you’re newly diagnosed or have been living with PMR for a while, this session offers practical insights you can use.
🎥 Watch the replay here: https://t.co/sAJEiwijBu

[CreakyJoints.org @CreakyJoints]

May brings awareness to more than just one condition—it highlights a range of chronic and autoimmune diseases that impact millions of people every day.

Arthritis. Lupus. Vasculitis. Myositis. Gout. Osteoporosis.

Different diagnoses—but often the same reality:
• Delayed or difficult diagnosis
• Symptoms like pain, fatigue, and inflammation that aren’t always visible
• Unpredictable flares that disrupt daily life
• The need for ongoing, long-term care
These conditions don’t look the same—and they don’t affect everyone the same way. Some are more common with age, others impact younger people—but together, they reflect how complex and interconnected chronic illness can be.
Awareness matters. Not just for recognition—but for earlier diagnosis, better care, and stronger support for the people living with these conditions every day.
#ChronicIllness #AutoimmuneDisease #ArthritisAwareness #LupusAwareness #HealthEquity

[CreakyJoints.org @CreakyJoints]

Vaccine access shouldn’t depend on how well you can navigate the system.

We’re connecting trusted vaccine info with real scheduling—directly through our hub.

Learn �� decide → book:
https://t.co/4zbBCWaX6x
@Walgreens @GHLForg

[Burke Holland @burkeholland]

It would be hilarious if we go through this whole AI thing just to find out that it’s ultimately cheaper to pay humans to do it

[CreakyJoints.org @CreakyJoints]

Do you still have symptoms from Graves' disease — even with treatment? You're not alone, and your experience matters.
We're looking for people living with difficult-to-treat Graves' disease to take a short poll. Your answers can help us better understand what patients like you are going through — and push for better care.
We see you — and we're asking for just a few minutes of your time.
Get started: https://t.co/p03ClWscvD
#GravesDisease #ThyroidHealth #Hyperthyroidism

[CreakyJoints.org @CreakyJoints]

Living with PMR and have questions about what to expect?
Join our upcoming webinar to learn about:
• Treatment options
• Managing symptoms & flares
• Navigating daily life with PMR
📅 May 5 | ⏰ 2–3 PM ET
🔗 https://t.co/30vdRrr9J5
#PMR #PolymyalgiaRheumatica #ChronicIllness