Location: Cornwall, UK
Hello everyone! My name's Jodie-Sue, I'm 22 and this year my Dad, Eric Mager, was diagnosed with Kennedy's Disease... He's a fighter, he's one tough cookie... And his continuous courage and hard work has resulted in the KDA website now having a link to contacts/info in Great Britain! So as someone who is a carrier of KD and from GB I thought I'd pop a post in here... I just thought I'd say hello and see how you guys are all doing... This is the first time I've publicly shared that I am a carrier (I have an appointment next week on the 18th for counselling about KD) and it feels slightly reassuring (although I'd never wish it upon anyone) that there's guys and girls out there like my Dad and me... Please know if anyone wants to talk, I'm here... I'm a good listener and want to offer my support to anyone possible... Ok guys bye for now and take care!
It's nice to hear there's ppl over there with the same situation. I'm also a carrier and i'm 23. Dad was diagnosed last june and we're still coping with the shock of it all.
I'd very pleased to be in contact with anyone interested.
Recently i came across a girl from the UK whose father was also going through this. She was searching for ppl with KD in the UK.
All the best for you and you family
Location: Cornwall, UK
Hello Maria... How are you today?
Thanks for the reply
Yes it is reassuring to know there are other people who understand what we're going through... My Dad was diagnosed early this year... Us too are still getting used to it all and adapting to new lifestyle changes... It's a huge shock isn't it? You just wish you could take it away for your Dad!
I have my first counselling appointment on Tuesday... I think they'll be discussing my options for when I have children and just general info on KD... Have you had any counselling?
Wishing you and your family a wonderful day!
Hello fellow KD carriers from across the pond!
Though I'm in the US it's still nice to know there are other carriers in the same situation as me! My dad was diagnosed years ago but we didn't fully understand the diagnosis or realize I was a carrier until about 2006. Even though we've known for years it's still something that makes me stop sometimes from shock when I realize how much life has changed for my parents and my family over the years.
I myself never got a chance to go to the genetic counseling but my parents did and brought back all their information. Let us know how the counseling went!
Happy new year to you both!
Location: Lincolnshire, UK
I am also a carrier in the UK. I am 16 years old and have known im a carrier form a young age. My dad was diagnosed with KD in 2000. I never really understood or ased questions until my mum and dad went to a conference in Las Vegas in 2007.
This is when I became curious of what KD was, how it affected him and what it meant for me to be a carrier. I have talked to my mum about it, but I used to tell her she would never understand because she isn't a carrier. Yes, I feel guilty for saying it, but she told me that she won't be able to fully understand how I feel.
She then got me to join KDA so that I could talk to others in the same situation. It has bothered me alot in the past 4 years, but at first I found it hard to talk about. I had genetic counselling about a year ago and it made me feel alot better although I don't want to think about having children for quite a few years yet, I wanted to put my mind at rest and know my options. I know that I have IVF as an option or if I unexpectedly fall pregnant there are options for me to consider. I have lately become more involved and there is also a KD UK facebook page. This helps a lot in many ways.
It's nice not to feel alone on this anymore and there are people here who really do understand one another.
Wishing everyone all the best.
Good evening to you all
It always feels so nice to log into this site and read the coments from fellows. I always tell my dad he's not alone in this world, but it's a real shame he does not sepak a word of english so he cannot use this forum.
I have not had a genetic counselling as i don't expect to have children yet but i'll try to look into what do they do here in Spain, so i can tell you.
All the best!
Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614