Dear Trudie……. This is a new feature for STARS. It is a chance for you to have your say. You may have had a funny experience or an annoying experience that you want to get off your chest. What ever you feel you need to write to the letters page about please try and keep it short. This page will not replace the individual stories so keep them coming as well.
Is there anybody out there?
Thank you STARS I know you probably get this all the time... but I’m 13 and I’ve been ‘fainting’ every day for about 8 months now. I know this isn’t very long but it seems like a lifetime. My doctors have been doing all kinds of tests for a while and I’ve just received a date for my 24 hr ECG (finally!). My paediatrician gave me a STARS leaflet so I had a look at the website.
We have two children Jasmine who is 5 and Wesley who is 17 months. Wesley has RAS. We would like to talk to (and meet if possible) with other parents and families who have a child with RAS. Wesley had his first seizure nearly a year ago, and rarely does a day go past without him having one, he is frequently having several in one day. He also has multiple fits on occasions. We are all struggling with the impact of Wesley’s RAS and we really need some help and support to enable us to deal with all aspects of it. We feel it would help us to understand more if we could hear other people’s stories and share our own experiences by talking with other parents and families living with RAS. To us as a family this would be a very valuable part of this huge learning process. Any contact would be much appreciated, so please get in touch through STARS
Reading your site made me so happy to know that it happens to other people and that I’m not as weird as I first thought. I just had to write and tell you how grateful I am. Thank you sooooooooooooo much for giving me a whole new outlook on my ‘condition’ I can’t thank you enough.
Trudie Replies..... We’re glad that STARS can be of help. No one should feel that they are the odd one out particularly when they have a medical condition. We trust your story will give hope to others.
Eleanor Hargreaves, London
It’s Only a Faint The strangest feelings come over me Distant, distant are those around My body is weak, my head like lead I’m falling, falling losing ground.
I hear you speak, your worried cry I am not dead, still with life Now I see your ashen face My journey causing so much strife
Dark and silent so alone That empty space is calling me I must return, get on my feet Why oh Why does this have to be?
Another medic has their say Not to worry, it’s only a faint Familiar words, so often said My reply “Just a faint, just it aint” 14
