Fundraise for myaware

Sharing our Colours this Rare Disease Day

My name is Candi and I was diagnosed with myasthenia gravis when I was 12 years old, although I had been showing symptoms for a few years before then, whilst at primary school. 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.

When I was first diagnosed, I didn’t understand what was happening to me and I hid my symptoms from my family and friends, making excuses for not joining in any physical activities and staying indoors when my friends played out.  But after years of falls, tears and putting weight on due to lack of exercise and movement, along with constant trips to the doctor’s, I eventually got diagnosed. 

It was actually a relief, because I finally had a name for what was wrong with me and people started to believe me when I said I couldn't walk, talk, swallow and smile.  Going to school with myasthenia was very difficult for me, even after diagnosis, because many teachers still didn't believe how unwell and weak I was.

Before myaware, I felt like no one else understood what it was like having myasthenia.

Apart from my family and consultant, I didn't have anyone I could talk to about how I was feeling emotionally, my symptoms and my treatment.  Most people just didn't understand what I was going through.  Most of all, I felt like no one really believed me whenever I tried to describe how weak and tired I always felt.  It was very demoralising and sometimes confusing. 

Then, when I was still very young, the Children’s Hospital I was registered at told my mum about myaware and suggested we join.

I'll never forget it.  Back then, someone from myaware offered to come to our house and brought a VHS video, showing some people with myasthenia.  I remember being scared and confused.  In those days, there wasn't a local group, we had to travel over 20 miles to attend a group meeting and I was still at school. I remember everyone in the room was much older than me, but things have changed now.

I use the myaware Facebook group to keep abreast of updates and see what other people living with myasthenia are talking about.  On several occasions, I have actually used the Facebook group to share information and give advice, based on my own personal experience

I attend the Zoom sessions when I can and my Mum joins them too, with and without me.    I really like these, because I can still join them, even if I'm weak or unwell and I just like the community spirit of talking with other people with myasthenia who live locally as  well as in other parts of the country.  These sessions are very informative and remind me that I am not alone.  My Mum finds these really useful too.

I have used several services from myaware, including getting advice on how to access benefits, local meetings and attending a national conference with my Mum.  I regularly use the website to find out information and especially when I visited doctors and consultants who didn't know anything about the condition and wanted to get more information around medications, research and symptoms.  My Mum and I use the website to make fundraising donations and to buy merchandise.  The website is an excellent resource and repository for information and I have found it really useful and helpful.

The myaware community means a lot to me.  It means that there is always someone and somewhere I can turn to for advice, support and friendship.

Myaware is an amazingly supportive, caring and knowledgeable charity and they have been a great comfort and inspiration to me and my family on many occasions.  We cannot thank them enough and we will always support the work that myaware does, as it continues to tirelessly and passionately advocate on behalf of people living with myasthenia across the UK.

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 £10 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.

Candi, myaware member

Watch more of Candi's Story here

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