Post date: 
Thursday, 27 July 2017

Last year, 22 year old Alexandra Lucas lost her sight to a rare condition called Devic’s disease. Alexandra shares her story about how she first came to have Devic’s disease and her plans for what’s next.

Devic’s disease is a really rare condition. I think only 100,000 people have it in fact.
At first the doctors thought it could be MS because one of the symptoms can be vision impairment. I had countless MRI scans to check whether it was MS and all my reflexes were checked but everything else seemed to be fine.
The doctors then started questioning whether it could be Devic’s disease because it basically acts in a very similar way to MS. With Devic’s it can either affect the optic nerves or the spinal cord, or in some unfortunate cases, it can affect both.
It’s a mutation in your antibodies that means your own body turns on itself and it can take your sight or it can paralyse you in literally the blink of an eye. 
For me, Devic’s disease started in January last year when I noticed that the vision in my right eye was really blurry. I was sent to an optician who thought, ‘Oh, it could be corrected with glasses’. But of course the glasses weren’t able to correct anything.
At work one day, I experienced an incredible headache, more like a migraine. It radiated from the bottom of my head to behind my eyes. It was so bad it was making me feel really ill. I went home and I went straight to bed, but when I woke up, I couldn’t see. 
My fiancé and I had just moved into a new place so we went in to town to get some things for the new flat, and I said, ‘I can’t see!’ he replied, ‘What do you mean, you can’t see?’ ‘I can’t see your face!’
He took me on the bus to the hospital but I couldn’t see the bus, even though it was right in front of me. I mean, buses are huge things, you can’t really miss them! 
The doctors were absolutely baffled. It all happened so quickly, I didn’t have time to take it in properly. I was in hospital for the best part of two weeks, and then seven months later I had a massive breakdown. ‘What if I never got my sight back?’

Nearly a year on I still think, ‘Maybe it will come back?’ When I’m sleeping, if I have a dream where my sight’s come back, I wake up and think, ‘Oh! It was just a dream!’

For a moment it comes over me again because the dream has felt so real but you have to keep going and I always think to myself, ‘It could have been so much worse.’ For other people, Devic’s disease can leave you paralysed and for me, it could have gone the other way. I just have to be thankful for what I’ve got. 
In my case, my optic nerves are damaged and there’s no repair. My partner and I have refused to believe that there is nothing else though, and we’ve researched online and found a hospital in Germany that specialises in optic neuropathy and optic atrophy, which is the main thing that I am diagnosed with. Doctors at the hospital have had really positive results from treatments, and as far as I can glean, they use electricity to rewire the brain into repairing the nerves itself. While it’s not been completely successful, it’s a massive step forward, so it does give us a bit of hope after having the bad news.

About Devic's disease 

  • Devic’s disease (also known as neuromyelitis optica) is a neurological condition, which often affects the optic nerves and the spinal cord.
  • When the optic nerves are affected, this can lead to inflammation of the nerve that leads from the eye to the brain. 
  • It can cause eye pain and reduced colour vision making colours look ‘washed out’ or less vivid than usual.
  • Optic neuritis causes a reduction or loss of vision and can affect one or both eyes. 
  • It’s a rare condition and is thought to affect less than 1,000 people in the UK.

This article originally appeared in Connect magazine - Summer 2017 edition.

More you might like