The story of Rebecca
I’m 27 and I have myoclonus dystonia and I was born with it but was diagnosed with it at the age of 20 in 2017 it was like a relief but at the same time, the scariest time in my life I started medication, not long after which I am on today
There was loads of questions and answers at the time that didn’t seem like I needed to know them
Later, I find out that maybe that wasn’t the case
This is my story
I tried Botox in my neck which failed it caused my swallowing to get worse so I stopped it after two sessions
September 2018 I met my husband then just a friend we were at college together on the Princes trust course than we did not know 4 years later would be married crazy
We also moved in to our flat but before that in 2020 I had an amazing surgery called Dbs surgery or deep brain stimulation. It was life changing. It enabled me to move in with my now husband who has spastic diplegia cerebral palsy
Living with such a rare condition nobody knows what it is but I don’t mind telling them about it I often say it’s a bit like Parkinson’s now in some ways
I’m 80% better after Dbs I am on clonazepam three times a day, but it helps Dbs is not a cure but it is sure life changing I recently changed consultants I realised the more genetic side of my condition since for instance the depression and anxiety that is part of the genetic gene I am now medication for which helps a lot it was surprising how much I was actually struggling
It was also so nice to know that the future holds the bright if I was to have children the chances of me passing it down or actually less than I when I was diagnosed
I don’t let my condition stop me. It has challenges in my life, but I overcome the challenges. With the help of family and my husband, I will not change anything for the world.
If anything I would spread awareness so nobody has to go 20 yrs undiagnosed like I did often think sometimes what would life have been like if diagnosed as a kid but the same time I would not met husband x