Thank you for visiting my page. Narcolepsy is a condition that I have seen develop and worsen in my sister over the past 5 years. She has good days and bad days, however leading the life of most 21 year olds is often not possible for Annabelle. On the 23rd April I will be running the Vienna Marathon to raise money for Narcolepsy UK, a charity with no government funding, solely run by donations.
Narcolepsy is often overlooked and through the response and success of Annabelle's blog, Narcolepsy isn't as rare as I once thought, there are thousands of sufferers, often struggling in silence.
Cataplexy is very commonly associated with Narcolepsy, something Annabelle is suffering from too. Now, for those of you who don't know, Cataplexy is a medical condition in which strong emotion or laughter causes a person to suffer sudden physical collapse though remaining conscious. Annabelle cannot laugh, get angry or upset without running the risk of her legs giving way. To begin with, before it was properly diagnosed, we thought this was quite funny, however seeing the frustration it causes, it really is not very funny.
With the correct medication Annabelle can begin to lead a normal life, she is able to drive, run a business, see friends, however over time the dosage of drugs must increase to prevent immunity. This is scary. What happens when the drug dosage cannot be increased further? What will Annabelle do then?
The money I am hoping to raise will go towards the research and develop of new drugs, hopefully a more long term solution and also to help those who are not as fortunate as Annabelle to have such a supportive team of family and friends around her.
I hope you can understand my frustration that this condition isn't taken more seriously and it's not cool because you can nap all the time, its life changing and often not for the better. Not only is Annabelle my sister, she is my best friend and it is so upsetting to see how annoyed and angry she gets at herself when she cannot keep her eyes open - something has to be done.
Please donate to a charity that is very close to my heart and lets raise awareness for Narcolepsy and Cataplexy together.
As little or as much as you can, everything counts.
A huge thank you