Our Syndrome. Your Information.

Our best hope for finding new treatments and raising awareness is your participation in JS-LIFE, the JSRDF patient-centered registry.

Whether you are affected, a caregiver, or related to someone who is or was affected, your information* could be the key. Please take a few moments to answer a few questions today.
*only one survey is necessary per affected individual


Joubert Syndrome UK



Welcome to the new JSUK Forum.  Some of the  areas are for members only, if you would like to join, please click HERE or LOGIN.

Now that I am 11...

Now that I am 11...

Now that I am 11 years old mum say’s lots of things will start to change for me. Mum told me I will start to grow up and I will get big like my brothers! When my brothers Luke & Rory came down for tea she said it again and I looked at Luke and then smiled at mum so she knew I understood.

http://www.jsuk.org/components/com_agora/img/members/3/mini_eleven.jpeg Me & Luke.

Mum also said that I will start a new bigger school later on in the year but I have to grow a bit more first. Mum said that when you start to grow up and get bigger ‘new things’ will happen and one of those ‘new things’ will be to make new friends. I will make a special new friend soon who I will have tea visits and sleepovers with instead of going to the special home where I used to go.
http://www.jsuk.org/components/com_agora/img/members/3/mini_new-wheels.jpeg In my new wheels.

I have been very busy since I started growing up I have tried out my new wheels in different places and I love them! The first test drive was a great adventure, a lady in a mobility scooter crashed into my new wheels and got stuck on them but my wheels were stronger haha!!
I have been happier because the weather is much better and I have been able to get out and about with my family and friends doing all sorts of things like nature walks, parties and eating out. I have made some new friends too and I hope to see them again at different events that I go to with mum.
I have been a little bit poorly as well and I keep getting a sore ear, it swells up and splits the skin, me and mum talked to my Dr about it but the Dr said she had no idea what was happening and I am a mystery, which made mum laugh!
When I was smaller I went to see a different Dr because I was getting a lot of pain in my head, he said I had to have an MRI again that is a special machine that looks inside your head, they couldn’t find anything that would make my head hurt but he gave me some medicine to try and now I don’t get the pain but I don’t like taking it because it tastes nasty! I fight with my mum when I have it and sometimes I win ?
My radio documentary recording is all finished. Beth sent me a copy of the CD to listen too, it was really funny listening to everyone on it, Beth did a great job and she got the highest mark in her exam. Beth said she is coming to see me soon and bring me some chocolate buttons to say thank you, I can’t wait.
I have to go now but in my next blog I will tell you about my special remote control!

New User
7 Posts
User info in posts
Administrator has disabled public posting

Re: Now that I am 11...

Nice wheels Jake.  cool  cool  cool

JSUK Web Admin

Please check out other sites we look after HERE

Web Admin
Web Admin
New User
5 Posts
User info in posts
Administrator has disabled public posting

Board Info

Board Stats:
Total Topics:
Total Polls:
Total Posts:
User Info:
Total Users:
Newest User:
Members Online:
Guests Online:

There are no members online

Forum Legend:

 New Sticky

Information contained on this website is not intended to replace information you have received from Doctors or other Health Professionals.
You should always consult with a Medical Professional for medical advice.
JSUK does not endorse any products nor can we be held responsible for any external links and their content.
Copyright 2010 - 2015  WWW.JSUK.ORG