I look fine. That's the hard part.
I live with myasthenia gravis (MG), a rare autoimmune condition. The signal between my nerves and muscles is partly blocked, so my muscles fail the more I use them. This page shows what that means, and who I am anyway.
This is the Kate most people meet
Or tap any photo to turn it over.
Glaciers, cliffs, canyons, Tower Bridge and coffee with a view.
Swipe, or tap the arrows.
Where would you like to start?
Messages that don't all arrive
My brain sends messages to my muscles, like posting letters. In MG, my own immune system blocks some of the post boxes, so not all the letters get in. The more I use a muscle, the weaker it gets. The name, myasthenia gravis, means "serious muscle weakness". There is no cure.
Messages that don't all arrive
The brain sends tiny messages to the muscles, a bit like posting letters. Each muscle has little post boxes to catch them. In myasthenia gravis, the body's own immune system blocks some of the post boxes, so not all the letters get in. The muscle gets weak, and the more it's used, the weaker it gets.
Myasthenia gravis comes from Greek and Latin and means "serious muscle weakness". There is no cure.
Lift a cup, again and again
In myasthenia gravis, the messages from nerves to muscles get partly blocked. So the more a muscle is used, the weaker it gets. Tap Lift the cup 5 times and watch both cups.
Tap "Lift the cup" to start.
Where myasthenia gravis can show up
Tap a part of the body.
Try reading like this
Eye muscles are often hit first. Switch the view and try to read the email.
Dear team, please find the report attached. The figures for the third quarter are on page four, and I've added notes on the two open questions from last week's meeting.
This isn't only an end-of-the-day thing. It can start straight after waking up and last for days.
Plan a day with 10 energy points
You have 10 energy points for the whole day. Pick what you'd do and watch how fast they go. Using the same muscles twice costs more.
Pick your first activity.
Managing MG is a second job nobody sees
What MG took, and what it couldn't
Took
- [Part of my sight]
- [An organ]
- [Something I used to do every day]
- [Spontaneity]
Couldn't take
- I never give up
- I always have a plan B
- I think differently
- I enjoy each moment
I've started again before
I'm from Ukraine. When the war came, I left everything and rebuilt my life in London, while living with MG. So when I say I find a way, I mean it.
I have big plans. I can't do them alone.
[Dream 1]
[Dream 2]
[Dream 3]
[Dream 4]
Things people get wrong about myasthenia gravis
Tap a card to see the answer.
Could you find someone with MG in a crowd?
Myasthenia gravis affects roughly 10 to 20 people in every 100,000, and it can start at any age. It's so rare that most people never knowingly meet someone with it. Pick a crowd and see how many people in it might have MG.
Small things that really help
For someone with MG, or any invisible illness.
- Skip "but you look fine"It can feel dismissive, even when meant kindly.
- Quiet doesn't mean unfriendlyTalking and smiling take a lot of energy. Someone with MG may speak less or look unhappy. It's MG, not mood.
- Offer specific help"Let me know if you need anything" is hard to answer. Offer something real: cook a meal, do a chore, help with the shopping, give a lift, or help with an online task.
- Help without a fussOpen the jar, carry the bag, hold the door, pour the drink, cut the food, reach the top shelf. No big moment needed.
- Ask, don't avoidAsk about their health and treatment, offer to come to an appointment, and tell others about MG. Silence makes it invisible.
- Bring a little joySurprise them with something small: a dinner, a movie night, flowers, a favourite treat. Joy they didn't expect goes a long way.
- Keep inviting, and accept cancellationsBeing invited means being included, even when they can't come. If they cancel last minute, "No problem, next time" means a lot.
Start wherever feels right
Personal fundraising details are coming soon.
Support MyAwareThe UK charity for everyone with myasthenia (reg. 1046443) Meet me for a coffeeIn person in London, or online Give an hourA task, a skill, or just companyThere's a place for you here
Support me
MG brings costs most people never see. If you'd like to help, any amount makes a difference.
Go to support pageOr help everyone with MG: donate to MyAware, the UK charity for people with myasthenia.
Let's connect
I read every message myself.
Thank you, .
Nothing in my day is guaranteed. Not even a sip of water.
I live with myasthenia gravis (MG), a rare disease. Every day my own immune system attacks the connection between my nerves and my muscles. There is no cure. Yet.
My body is trying to kill me. So far, I'm winning.
I live with myasthenia gravis (MG), a rare disease. Every day my own immune system attacks the connection between my nerves and my muscles. There is no cure. Yet.
I'm looking for new connections and curious minds to build something meaningful with.
Any of this can happen any day. No warning.
I don't choose my day. Neither do you.
MG is unpredictable. Roll the dice and see what my body allows today.
Any of this can happen any day. No warning.
Tap a part of the body.
Professional survivor.
"The patient is more alive than dead." My favourite joke. And my reality.
MG took almost everything from my life. It put strict limits on every activity and took away the ability to do things the way other people do. It couldn't take what's inside.
It's hard to know me in a few minutes.
I accepted the diagnosis. I never accepted a boring life.
You're a weirdo!In a good way. I agree.
I can't imagine how you do it.The answer is hidden somewhere in my mindset.
You inspire me.People often say my approach to life changed the way they see their own problems. Happy to help.
I notice the small things.
How you say something, what you don't say, the tiny details. Sometimes I'll tell you what I see, directly. Never to hurt you. I want people to live their best lives, and many tell me later that it changed something for them.
What people say when they find out
"Did you hurt your leg?"
No. I use a cane to keep my balance. I have an autoimmune disease.
"Oh dear, you're too young to be sick."
MG doesn't check your age.
[silence, staring]
That's when I've said: "There is no cure."
We're stuck on Everest.
Snowstorm. Many kilometres to walk to survive. We have one bar of chocolate between us. What do you do?
Pick one. I'm watching how you choose.
Games like this run in my head all the time. One day I want to turn them into shows and games where people can feel what MG is like.
When doctors say there's no way, I'm already on two new ones.
I accepted the diagnosis. I never accepted a boring life, or sitting and waiting for things to get better. I'm a person of action. Every limit makes my brain look for another way, and for even more out of life. That's why I'm unstoppable.
I lost everything once. I built it all again.
I was born in Ukraine and had a full life there. When the war came, there was no time to pack. I escaped with nothing and started again.
Today I live in London, work full-time in finance, and enjoy every moment I can. I adapted to a new country, learned a new medical system and built a new life. Proud to be a member of the MG community, and to show that life with MG can still be full.
Looking for the right people
I don't have a finished plan yet, and that's the exciting part. These are the directions I keep coming back to. If one of them sparks something in you, let's talk.