Rare Disease Day 2024’s theme is ‘Share Your Colours’. For this appeal we are sharing Ines’ story with you. We would also like you to raise awareness about myasthenia by telling your story and ‘Sharing Your Colours’ with the rest of the myasthenia community. We are the myasthenia community, and our colours bloom brightly. Let’s share them.

Raise awareness by telling your story, visit the Myasthenia Awareness Bloom Bouquet through the visufund website.

Visufund is a trusted third-party website. Please see Visufund’s privacy policy or frequently asked questions section if you require more information.

Choose a colourful flower by hovering your mouse over the bouquet, share your story, make a donation and help our community bloom. By sharing your story on our Bloom Bouquet, you can introduce yourself to others in the myasthenia community. Alternatively, if you would prefer not to add a flower to the bouquet, but would still like to donate to the appeal, you can do this by pressing the Donate to myaware’s Rare Disease Day 2024 Appeal button on this appeal webpage or simply do not enclose your story with your cheque or when you donate over the phone.

Ines’ Appeal Story

Ines has experienced three myasthenia crises since developing myasthenia gravis 23 years ago, and found myaware extremely helpful, recommending that others who have myasthenia reach out to the myaware support team, too.

“It’s not been an easy journey. I’m on my third big crisis now. The first crisis was in 2014, which took me a year to recover from. The second was in 2018, which left me 3 months off work, and in 2021 I had another crisis. I became dependent again, so I went to live with my brother and it’s him helping me out. My friends help with whatever I need. My family and friends have always supported me, and I feel very lucky and grateful to have them.

When I first developed symptoms, my mom took me to the GP who sent us straight to the A&E with a letter. There, we were lucky to find a neurologist. He examined my strength and did the Tensilon Test to find out if I had or not myasthenia gravis, as he suspected. I was not ready for the transformation that myasthenia would have on my life.

This Rare Disease Day, can you place a flower or donate £10 to help our community’s colours bloom even brighter?

By sharing your story you can map out your own experiences, which can help others. We politely ask that you don’t refer to neurologists or other health professionals specifically, or negatively, by name or give out geographical information about yourself. Myaware reserves the right to delete any comment or content (without notification) that is deemed inappropriate, or that could pose a reputational risk to myaware.