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All affected by Thyroid Eye Disease (TED)
You’ll never walk alone

Ashok Bhaseen, MPharm, MMS, President of Thyroid Federation International and Dr. Ricardo Morschbacher a leading TED Spe...
10/11/2026

Ashok Bhaseen, MPharm, MMS, President of Thyroid Federation International and Dr. Ricardo Morschbacher a leading TED Specialist from Brazil stopped by our TED Community Organization booth at the ASOPRS conference. Two compassionate leaders. We have a passionate interest in the global TED Community. A shared goal is to reach as many TED patients as possible, beyond borders.

Dr. Raymond Douglas visited our booth at the New Orleans ASOPRS conference. It was an amazing three days of connecting w...
10/11/2026

Dr. Raymond Douglas visited our booth at the New Orleans ASOPRS conference. It was an amazing three days of connecting with physicians (TED specialists), our generous partners, and many others who support our TED Community in the most compassionate ways. Heartfelt thanks to our beloved Julie Owens for helping me in a multitude of ways throughout this important event.

On September 13th the TED Builders traveled to Boston for a 2-day meeting that will likely change the course of the TED ...
09/21/2026

On September 13th the TED Builders traveled to Boston for a 2-day meeting that will likely change the course of the TED Community Organization along with our newest addition, GravesCommunity.org.

Our purpose was to design the TED/Graves' Whole Person Care Program, to be launched during TED Awareness Week, November 9-15.

The program will combine:
β€’ AI-informed patient and health literacy
β€’ Reliable health and medical information
β€’ Anti-inflammatory lifestyle education
β€’ Partnership with healthcare providers
β€’ Personal reflection and customization
β€’ Small, realistic and sustainable changes
β€’ Learning from others with lived experience
β€’ Guidance from medical and other subject-matter experts
β€’ Ongoing community support and encouragement

Learn β†’ Nourish β†’ Move & Restore β†’ Partner in Care β†’ Emotional & Social Wellbeing β†’ Reclaim Your Life β†’ Stay Connected

At best, helping participants live more fully and navigate their individual journey from TED to NED (no evidence of disease).

Heartfelt thanks to Viridian Therapeutics, Inc. for hosting the TED Builders Workshop. To Jennifer Helfer for believing in us as TED patients on a mission! To Courtney Firak, MPH for making a million and one details come together. To Viridian CEO Steve Mahoney and team for your great sense of humor and kindness is answering our multitude of questions.

And most of all to the TED Builders who share the vision of a global TED / Graves' Community, joining hand in hand, moving confidently from isolation to a brand new story that includes a happy ending ❀

TED Builders Boston Photo Gallery
https://lnkd.in/enRfR-Uz

Upcoming in-person event with Dr. Raymond Douglas and his team! October 17th in Houston. Please let us know if you atten...
09/21/2026

Upcoming in-person event with Dr. Raymond Douglas and his team! October 17th in Houston. Please let us know if you attend as we'd love to have a first-hand report on this great event!!

CheckRare features our new GravesCommunity.org website! Launched during Graves' Awareness Month, our TEDCommunity.org pa...
09/12/2026

CheckRare features our new GravesCommunity.org website! Launched during Graves' Awareness Month, our TEDCommunity.org partner website provides education, support and links to our many free programs for TED & Graves'.

Heartfelt thanks to CheckRare.com for so kindly acknowledging and shining a light on our TED & Graves' Community ❀

https://www.youtube.com/watch?v=xVvsR1eCwBM

Reclaiming Your Thyroid Health: How New Tools and Teamwork Protect you.... A SNAPSHOT INTO THE FUTURE....For patients wh...
09/11/2026

Reclaiming Your Thyroid Health: How New Tools and Teamwork Protect you.... A SNAPSHOT INTO THE FUTURE....

For patients who suffer from managing a can feel like riding an emotional and physical rollercoaster.

The constant worry about symptoms escalating into a dangerous " " (storm) is real. But there is incredible news:

and ( ) are fundamentally changing how we can manage this condition, giving you more control and peace of mind.

Think of it like upgrading your health management from a simple map to a precise, live GPS system.

Modern digital tools and " " (the smart clues your body leaves that can be tracked by , , ) have the potential to transform your care, and here is how:

1. Empowerment in Your Pocket ( )

New apps and wearables can constantly check your biometrics, like your and trends. They even learn what's normal for you, including .

When you add simple symptom tracking for things like heat, sleep, or mood, you create a powerful daily health diary.

Medication reminders ensure you never miss a dose, preventing subtle treatment drift. All of this can provide an early warning, catching subtle changes before they become problems.

2. Seamless Communication and Support

Forget waiting for your next check-up to share a concern. These digital platforms in the future will have the ability to act as a seamless communication hub, linking you directly with your care team.

Proactive clinical alerts can warn of potential issues based on the data you share, prompting early intervention. has the potential for you as a patient to see your doctor from anywhere. IN the future, your ( ), and information from your can be integrated and to daily trends, to create longitudinal (tracked over time) and instantly available.

3. Teamwork for Precise Care

The best care isn't just one doctor; it's a team. In the future your , , , and other specialists can all see your real-time data and collaborate.

By analyzing your personalized , your gains real-time, precise insights that lead to better, more targeted clinical action plans. This includes precise dose titration and risk stratification, so everyone knows exactly how to best support your health.

Preventing Complications, Saving Resources

Untreated or suboptimally managed can lead to devastating, expensive, and sometimes such as .

By embracing these digital tools, we can proactively manage your care, significantly reducing the risk of a dangerous thyroid crisis.

We will move away from reactive, fragmented care towards a unified, personalized path, ensuring you and your team are always one step ahead. There is HOPE!

You don't have to navigate your thyroid journey alone or in fear. These digital innovations will help patients take control of their narrative, be empowered and proactive towards a path to wellness.

Share this graphic! Let's start the conversation. What digital tools have helped you manage your thyroid?

Prevent Blindness offered an ASPECT intensive TED Storytelling Workshop earlier this week. 12 of us with thyroid eye dis...
08/27/2026

Prevent Blindness offered an ASPECT intensive TED Storytelling Workshop earlier this week. 12 of us with thyroid eye disease got a masterclass in the art of creating scenes, summaries, and reflections using our lived experience with TED. It was phenomenal and deeply appreciated ❀

Understanding   ( ) πŸ‘οΈβš‘How to track your symptoms & speak your doctor's language.If you have   or thyroid issues and not...
08/27/2026

Understanding ( ) πŸ‘οΈβš‘

How to track your symptoms & speak your doctor's language.

If you have or thyroid issues and notice , , or .....you aren't alone.

TED is an where the body attacks the tissue behind the eyes. Knowing what your doctor checks helps you take control of your care!

🚨 1. Active vs. Inactive: Which Phase Are You In?
TED travels in two distinct phases. Knowing your phase tells you what treatment comes next:

πŸ”₯ Active Phase (Inflammation): The eyes are swollen, red, or painful.

Goal: Calm the fire using anti-inflammatory meds or biologic therapies.

🧊 Inactive Phase (Stable): The redness stops, but scar tissue or muscle tightness remains.

Goal: Repair and restore using reconstructive surgery or prism glasses.

πŸ“Š 2. The CAS Score: Measuring the "Fire"
Doctors use the Clinical Activity Score (CAS) (0 to 7 points) to check for active inflammation:

πŸ‘οΈ : Aching behind the eye or pain when moving your eyes.

πŸ”΄ : Red eyelids or red eye surface (conjunctiva).

🎈 : Puffy eyelids or swelling in the corners of your eyes.

Rule of Thumb: A score of 3 or higher means active TED that needs medical treatment to calm inflammation!

πŸ‘₯ 3. The : Rating
If swollen eye muscles make you see double, doctors grade it on a 0 to 3 scale:

🟒 Grade 0: No double vision.

🟑 Grade 1 (Intermittent): Only when tired or waking up.

🟠 Grade 2 (Inconstant): Only when looking far left, right, up, or down.

πŸ”΄ Grade 3 (Constant): Always double when looking straight ahead or reading.

πŸ’¬ 4. Take-To-Your-Doctor Checklist
Ask these exact questions at your next appointment:

πŸ“ "What is my (CAS) today?"

⏳ "Am I in the active or inactive phase right now?"

πŸ‘“ "Would temporary help my double vision?"

What has been your biggest challenge when tracking eye symptoms?


Navigating   and understanding the Signs of   ( )If you are managing an autoimmune thyroid condition like Graves’ diseas...
08/25/2026

Navigating and understanding the Signs of ( )

If you are managing an autoimmune thyroid condition like Graves’ disease, it is vital to understand that your immune system can also target the tissues surrounding your eyes.

Many patients experience symptoms they believe to be unrelated, but these often signal Thyroid Eye Disease (TED).

If you recognize these common signs, please mention them to your provider and care team as you may need to see a specialist and get more specialized testing:

β˜€οΈ LIGHT SENSITIVITY (Photophobia): Do your eyes ache or tear up in bright sunlight or standard indoor lighting?

🏜️ DRY, IRRITATED EYES: Is there constant redness, burning, or a "gritty" sensation, as if sand is trapped under the lids?

🎈 EYELID SWELLING/PUFFINESS: Have you noticed heavy lids, puffiness around the orbits, or eyes that look "baggy," especially in the morning?

πŸ‘“ DOUBLE VISION (Diplopia): Are you having difficulty focusing, or is your vision splitting, causing images to overlap?

πŸ’₯ EYE PAIN OR PRESSURE: Do you feel a deep, dull ache behind the eyes, particularly when moving them side-to-side?

The Critical Connection

Thyroid Eye Disease (TED) is a specific autoimmune process resulting in orbital inflammation and swelling. It can occur even when your blood thyroid levels are within normal range.

The Comprehensive Action Plan

πŸ—“οΈ SCHEDULE AN APPOINTMENT: Seek an evaluation with a specialist care team (Endocrinologist, Oculoplastic Surgeon, or Neuro-Ophthalmologist).

πŸ“ PREPARE A SYMPTOM LOG: Track the frequency and severity of your eye symptoms.

πŸ’¬ DISCUSS TREATMENT OPTIONS: Early specialist intervention is crucial for proper management.

Please share this post to help raise awareness and ensure patients get the timely specialist care they deserve.




References:

Acharya, M., et al. "Ocular Surface Dysfunction and Quality of Life in Thyroid Eye Disease." Indian Journal of Ophthalmology / Survey of Ophthalmology (review in Current Opinion in Ophthalmology focusing on thyroid-associated ophthalmopathy and ocular surface involvement).

Bartalena, L., et al. (2021). "The 2021 European Group on Graves' Orbitopathy (EUGOGO) clinical practice guidelines for the medical management of Graves' orbitopathy." European Journal of Endocrinology, 185(4), G43-G67. (Notes that persistent surface symptoms, lagophthalmos, and photophobia warrant active evaluation for disease activity and corneal exposure).

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