Hi, I am a new member to the group and my 8 year old has just had a diagnosis of Dent's. I was wondering how many people who are members here are from the UK? I would love to get in contact with as many people as possible as my son is struggling with the thought that he is alone with the disease (my other two boys have not been tested yet) Vicky

Hi vicky. There are a few of us although we have not had a chance to meet up. I'm in Gloucestershire. It's a tough time for you I am sure. My son was 8 when he was diagnosed. He's now 10. Have you seen the post about the meeting in London next Saturday 15th? Lada is coming over and all patients/ family are invited. I am going to go. Thinking of you. K :)

Hi Vicky I'm sorry your son is finding it hard. My son was 10 when diagnosed & is now 21 and, fortunately, in good health. I live in Middlesex/West London. I'm also planning to go the meeting on the 15th. Take care Val

I'm not sure if I can get the time off or find anyone to have the boys, I would love to come down and learn more about it. My son is also in good health at the moment and fortunately he is still very willing to take his medication. He also has growth hormone deficiency, which the doctors he sees didn't believe there was a link but as I ahve seen from here and my own search there is. I have tried not to read too much at the moment as I knew I would get confused. Thanks for getting back to me, It feels so nice to know we are not alone Vicky

Hi again. My son is also on growth hormone. Where are you in the uk? I think the problem is that as there are so few of us out there it is likely that the paediatricians will not have come across dents be fore. But well done you for finding rareshare. It's been a good support for me. Keep your chin up. K :)

We're in Leicester but he see's a team from nottingham. I'm hoping to try and get time off on saturday so we can come down to london. They've already admitted we probably know more than them. So the next few months will be interesting... I'll keep you updated on the work situation and fingers crossed we'll make it. Do I have to register before going?

Hi Vicky Here are the two links that I used to register & find out more info: http://www.rarekidneystones.org/2012registration.html http://www.cystinuriauk.co.uk/ If you can't make it & I go, I can send you any info that I pick up. Val

Thanks Val, I'll do my best to get there Vicky

Looking forward to meeting you Val and hopefully you too Vicky Best wishes Katy

Hi Vicky My son was diagnosed about 6 years ago at the age of 8. So far there has been little discernible impact but I am always trying to learn more about his condition. This site is one of the best for trying to gather as much information as possible and just as importantly finding others that are in the same position. You are not alone! I live in London but am going to struggle to make the conference this Saturday. I am already in contact with Katy. It would be good to form some sort of UK sub forum either on line or off line to improve communication. Best Paul

Yeah that would be great, Tickets are booked and we're coming down to London on Saturday Vicky