We want your help to raise awareness of myasthenia this year, so we invite you to take part in MyJourney.

Myaware has always been driven forward by our amazing members and their families. Your dedication and inspirational stories have helped enable myaware to achieve all that it has, ensuring our community can continue to fight myasthenia together. During Myasthenia Awareness Month, we are celebrating your achievements, wherever you may be on your journey.

The emotional miles can be the hardest and we want to hear your milestones. Submit your story and we will display it here on our website and create a graphic for you to share on social media.

Share your story

My Journey form

Please select a donation amount (required)

£5 Could pay for one New Member Pack

£10 Could pay for MyNews and other communications for a member for a year.

£30 Could pay for two community information packs to raise awareness of myasthenia.

£80 Could fund the cost for one person to be supported through a Benefits/Welfare Application or Tribunal process.

Other

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Your stories

Yvonne Petitjean

We need to have some form of outlet and sense of independence, yet myasthenia comes with us wherever we are. In time, and with encouragement, I took to amateur photography in a limited capacity. Photography helps us all to stop, stare, gaze and breathe. For a few moments to dream. To hope. To engage with others whilst trying to manage myasthenia. Photography provides reason to move, to use muscle, to try and find resolves. I use this hobby to share brightness and colour with others... and with the world.

Sarah Holcombe

Since my MG diagnosis, I’ve learned to celebrate progress - walking a mile a day, planning a family holiday, even chopping an onion. I’m back at work after surgery and reducing my meds. Big or small, every win counts. My MG might be strong, but so am I!

Brooke

MG completely reshaped my life, but not all in negative ways. It took away one dream, of becoming an opera singer, but opened the door to another. I’m now studying engineering at the UK’s top university, designing products that aim to make daily life easier for people with health challenges. Just this month, I was offered a job I never thought would be within reach. I’m hopeful for what’s ahead, and incredibly grateful to still be here, building something meaningful from what I’ve been through. 

Cameron Tiah

I was always active and confident, doing ballet, gymnastics, and cheerleading. But MG brought double vision, fatigue, pain, and caused severe anxiety that made everything harder. University became too much, I couldn’t keep up no matter how hard I tried. After years of symptoms being dismissed, I was finally diagnosed and had surgery. It hasn’t been easy. I’ve had to let go of a lot, including my studies, but I’m learning to slow down, prioritise my health, and find strength in the small wins. MG is invisible, but the battle is real. But I’m still here, trusting and believing it will get better.

Yvonne Petitjean 

Our Myasthenia specialists know there are many triggers which cause fluctuations and many factors which have to be managed as best we can when living with Myasthenia. Limiting and fluctuating. Permanent. Our specialists note it is not easy to live with nor to live through Myasthenia. They help where they can. Living alone with Congenital Myasthenia is not easy. Yet I look for colour and brightness within “Windows Of Time”. Therapeutic pass times. Finding peace, gentle pace and rest as needed. With much appreciation to our Specialist teams for devoting their lives to learn about Congenital Myasthenia. For caring about those less fortunate than themselves. They are Angels on Earth. 

Jill Armour

Myasthenia sneaks up on me like a pesky wasp in the summer, buzzing around a fizzy drinks bottle. It just keeps coming back. Myasthenia is sometimes quiet like a feather floating down from the sky, but sometimes loud, so loud, like a siren that makes my heart pound with urgency. What if this time I don’t get over this flare? Myasthenia is a thief: a cruel intruder who sneaks in and steals energy, strength, hopes and dreams. Myasthenia is a teacher; I know my body so much better due to the lessons it has taught me. Myasthenia is not going anywhere, I’d like it to buzz off to find another fizzy drinks bottle, but I can’t control that, I don’t have the energy to try. So I accept MG, I don’t like it, but it’s here to stay, so best pull up a chair and get comfy 

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