- Hyperekplexia
- Interviews
Marjorie's interview
How did all start?
I was born with this but did not find out what it was until I was in my late 20's
Do you already have a diagnosis? How long did it take you to get it?
Myself and my family were tested following the birth of my nephew and found that there were 5 members with this condition. My brother later went on to have another child with the condition.
What has been the most useful thing for you so far?
Finding out what was wrong, I always thought I was different but did not know why. Now I know there is a reason for me being like I am.
What have been your biggest difficulties?
Mobility, especially when my children were young and now as my grandchildren are young I find I can not do as many things that I would like with them.
How has your social and family environment reacted? Have your social or family relationships changed?
My family are very understanding as we have lived with this for many years as my mum, now 81 has always had mobility difficulties. My friends do not fully understand this condition but accept me as me.
What would you like to do if you didn’t have your condition?
Go for a run.
