“I am still the strong, confident, resilient, person that I’ve always been”

So, you found out you have a rare disease that you have never heard of. I know you’re frightened and the future is unclear, but I am here to tell you that you are not alone. I have been where you are now, and I want to assure you there is hope.

Few have heard of myelin oligodendrocyte glycoprotein antibody-associated disease, or MOGAD - a disease that causes fatigue and can often be painful. I won’t lie to you and say that living with MOGAD is easy, because it does come with its fair share of challenges and uncertainty; the sudden lack of energy or loss of vision can be lifechanging. But rather than allowing this to completely stop you from doing the things you love, you can learn to make the most of it when you’re feeling good and rest when you are not. 

I couldn’t work at times and I often cried as I’d lay in bed praying that I would live long enough to see my girls walk down the aisle at their weddings. It took a lot of determination, but I leaned on my faith to change my way of thinking. I decided to fight and to focus on taking care of my family as best I could, do what work I was able to do and rest when I had to. I was fortunate to have a loving husband, family, friends and colleagues who understood and cared. 

Living with MOGAD has meant adjusting my daily activities, rather than stopping them altogether – I am still the strong, confident, resilient, person that I’ve always been. 

Over time I realised that I didn’t want my condition to affect my day-to-day life and sought to make sure others living with MOGAD never felt alone either. In many ways, my MOGAD diagnosis has put me in a better place to understand people in similar situations. Of course, it has been difficult, but my diagnosis has made me thankful for what I have.

I promise you this is not the end of your story; it is the start of a new chapter filled with hope. And yes, next year, I will be watching my daughter walk down the aisle at her wedding.

Julia