MyMyelitis - MOG Antibody Disease Education

26/05/2026

Hey everyone!

Living with MOGAD can be confusing, isolating and overwhelming.

I've opened a limited number of free 45 minute conversations for people living with MOGAD or awaiting diagnosis.

We can talk about:
✓ Symptom uncertainty
✓ Relapses and treatment decisions
✓ Fatigue and daily challenges
✓ Rebuilding confidence
✓ Practical next steps

Book here -

Living With MOGAD Can Feel OverwhelmingYou don't have to figure it all out alone.Book a free 45-minute conversation to talk through your situation,

12/04/2026

Final reminder that my MOGAD audience survey will be closing soon.

If you haven’t filled it in yet and would like to help shape future MOGAD content/support/resources:

👉 Survey Link: https://forms.gle/NW7uSRZTDNnKjLDY6

It takes around 2–3 minutes.

I’ve also opened a small number of research calls if anyone is willing to speak more in-depth about their experience:

👉 Book Here: https://calendly.com/scott-tarpey/mymyelitis-audience-research-call-wscott

Thank you to everyone who has contributed so far!

Hey! 👋 Thank you so much for taking some of your precious time to fill out this survey for me. I'm eternally grateful. Please be as honest as you can, and I promise to use the answers to make my content and the MyMyelitis platform as valuable as possible for you.

09/04/2026

I’m working on new resources to help people living with MOGAD feel calmer and more in control, and I’d love your input.

If you’ve ever felt uncertain about your symptoms or recovery, your perspective will really help shape what I create next.

It only takes a few minutes, and I’ll share a summary of what I learn with everyone who takes part.

Hey! 👋 Thank you so much for taking some of your precious time to fill out this survey for me. I'm eternally grateful. Please be as honest as you can, and I promise to use the answers to make my content and the MyMyelitis platform as valuable as possible for you.

02/04/2026

Have you ever been told you’re “stable”…
but still feel like something isn’t right?

This is something a lot of people experience with neurological conditions like MOGAD and Transverse Myelitis and it can be really confusing.

Because from a medical perspective, things might look stable.
But day to day, your body can feel very different.

That disconnect can make you question what you’re feeling and whether something is wrong.

If this resonates with you, I’d be really interested to hear your experience.

Have you had moments like this?

(You can comment below or message me privately if you’d prefer)

Watch the full video here: https://youtu.be/r47FY0hKNoQ

01/04/2026

April is MOGAD Awareness Month 💙

It’s a rare condition… but for the people living with it, it affects everything.

Over the next few weeks, I’ll be sharing what MOGAD actually looks like day-to-day.

If you’re living with MOGAD, supporting someone who is or trying to understand it better, make sure you follow along.

24/03/2026

Recovery from MOGAD (and similar neurological conditions) doesn’t always feel linear.

It’s not always a steady improvement.

Sometimes it feels like progress…
and then suddenly like you’ve gone backwards again.

That can be really confusing, especially during the early stages of your recovery when you don’t know if it’s something to worry about or just part of the process.

I’ve just shared a video talking through this and how I’ve started to make more sense of those ups and downs:

https://linktw.in/rpzpIT

I’d be really interested to hear if your recovery felt like this too?

Recovery from neurological conditions like MOGAD isn’t always linear.You can feel like you’re making progress one week…and then feel worse the next. Even whe...

18/03/2026

I’ve just shared a new video about something that took me a long time to understand living with MOGAD.

Being told you’re “stable”… But not actually feeling stable.

Your scans are fine.
Your doctor is happy.
But you’re still dealing with fatigue, symptoms, and uncertainty which can change each day.

This is something I’ve personally experienced, and I know a lot of others have too.

In this video, I try to explain why that difference exists and why it doesn’t mean something is going wrong.

🎥 Watch here: https://linktw.in/iSHOft

Would be really interested to hear if this is something you have experienced too. Let me know in the comments below!

Many people living with MOG Antibody Disease (MOGAD) or Transverse Myelitis are told they are clinically stable, but still experience fatigue, fluctuating sy...

05/03/2026

Six years with MOGAD has changed many things but one of the biggest ones has been how I relate to uncertainty.

The condition doesn’t give clear answers and it doesn’t always follow neat timelines. Especially since this condition is still very new.

This short clip is taken from my full reflection video.

If uncertainty has been one of the hardest parts for you too, let me know in the comments below.

You can watch the full video here:
https://youtu.be/CSy9et90IAQ

02/03/2026

One change I didn’t expect with MOGAD was reduced tolerance for stress.

Situations I used to handle easily can now feel concerning not because I’m weaker, but because my nervous system responds differently.

Stress can amplify symptoms. It can increase fatigue. It can make everything feel heavier.

That doesn’t automatically mean relapse.

I shared more about this in my 6-year reflection on living with MOGAD:
https://linktw.in/hTzhOx

Has your stress tolerance changed over time?

26/02/2026

One of the most difficult aspects of MOGAD is the part that isn’t visible.

MRI scans and clinical notes tend to focus on relapses but many of the day-to-day realities don’t show up on a scan.

A lot of people refer to this as brain fog, and for me it likes to show by being unable to recall words when I'm trying to explain something.

I’ve shared a full reflection on what 6 years with MOGAD has taught me here:
https://linktw.in/hTzhOx

For those living with this condition - What parts feel most invisible to you?