The theme of Rare Disease Day this year is to ‘Share Your Colours’.  There are over 6,000 rare diseases in the world, including myasthenia. We are the myasthenia community and our colours shine brightly.

Myaware asked member and supporter Zainab to share her myasthenia journey with us for Rare Disease Day 2023. Here is what she had to say…..

What was life like before Myaware? Where did your myasthenia journey start?

It was a Friday afternoon; I was in my room. I received a call from an unknown caller but, seeing as I had been in and out of hospital for the past few months, I thought it best to answer. “This is Dr X. Your bloods were positive, confirming a diagnosis of myasthenia. You can come and pick up medication on Monday.” I was 15. And I had just received a lifelong diagnosis of myasthenia over the phone. This had been after countless scans, lumbar punctures, and sleepless nights for my family as possibilities of brain tumours and serious conditions were thrown about. I didn’t know what to do. Initially, I was happy as I thought this must be good news; a diagnosis surely meant cure? But as I researched, I came across the words “incurable”, “extreme weakness” and, notably, “rare”. Suddenly, I wasn’t so happy and, despite the supportive family I had bolstering me, I had never felt so alone.

What services have you accessed from myaware and how did they help?

No one truly knows what it’s like to have myasthenia unless they too have myasthenia. When I was informed about myaware, I was reassured in the knowledge that I wasn’t alone in this fight. I was lucky in that I was diagnosed before the pandemic and so managed to attend one in person event – this was such a valuable experience, and I met people whom I am still in contact with almost 4 years down the line. A friendship forged on mutual experience is extremely powerful, and without myaware I would not have met some exceptional people.

What has your experience of the Facebook groups and Zoom sessions been?

As a young person, my daily routine - from university to personal life - makes use of social media. It is therefore great that myaware has online platforms which you can join to interact with fellow MG warriors or simply to feel part of a community. The zoom sessions are great, especially during the pandemic, as I remember shielding being an isolating time when most of my friends didn’t have the fear of serious illness looming. Thanks to myaware, I have been able to connect with countless people through these platforms.

What does the myaware community mean to you?

Myaware was the first organisation that made me feel like I wasn’t the only person out there battling myasthenia, and that myasthenia wasn’t the end of the road; those in the myaware community are testament to the latter. As a 15-year-old, being diagnosed with an incurable condition shattered my world. I felt like my future had ended and I’d never be able to achieve my goals.

But thanks to myaware and my amazing family, I now know I can achieve whatever I put my mind to. However, I know that I will have to rest more than my peers and will have to deal with more relapses and bad days; but I know I have my family and the myaware community by my side. Now, I try to give back to myaware by fundraising at university and raising awareness through social media, which you can keep up with here. 

Myaware have been an important part of my story so far, but they receive no government or NHS funding and rely on donations and gifts to support their work.

This Rare Disease Day, can you donate to help our community’s colours shine even brighter?

I understand that in the current economic climate, you may not be able to donate. If this is the case, could you share this appeal with your family and friends via social media, text, phone or email? Ask them to visit the website to find out more. Or perhaps you could nominate myaware as a chosen charity at your workplace, faith group or social club? Anything you can share will help raise awareness of our community.

Thank you for supporting our amazing community this Rare Disease Day.

Zainab, myaware member

If you would like to share your story with myaware to feature in a future newsletter, appeal or on the website, email [email protected]