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Registered Charity No. 249338
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October 2013
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Newsletter
Welcome to the third ‘This is Me’ newsletter. In this edition you will meet Georgia who is going to help with the newsletter in future, and Hannah and Louis who are two members of the ‘This is Me’ club. You will also get the chance for an amazing visit to the home of Welsh Rugby - the Millennium Stadium! Read on, sport fans…
Georgia ...
to the hospital for an MRI. The radiographer at the “Hi everyone! My name is hospital missed a cyst in Georgia and I’m 17. I am my brain and so I didn’t see a neurologist until the new to the ‘This Is Me’ January. Once I saw the club and will be helping neurologist I had various with the newsletter - so look out for my upcoming tests, but the doctors were confused how I could be articles throughout. I so ill yet not have any other was diagnosed with symptoms. Within 2 days hydrocephalus in I was in hospital having an 2010 after an MRI ETV. scan showed enlarged ventricles in my brain. Up It was a very scary time, until that point I was not as I wasn’t really sure what aware of any problems, was happening. and I had never heard of hydrocephalus, it was Unfortunately the operation only until in the August didn’t work and fluid began of 2009 that I began to to leak from my head, and violently shake. Other around one week later I than the shaking, I never suffered any other hydrocephalus related symptoms. When I visited the doctor he just put me on tablets to minimise my shakes. When the shaking got worse I went
E: thisisme@shinecharity.org.uk with photos, messages and ideas for your club!
www.thisisme.org.uk
went back to hospital to have a shunt fitted. I was so upset as my head needed to be shaved. I’d never have thought that I would leave school in the January and not go back for 4 months! I then returned to school on a part-time basis and eventually went back full time. It was important that I carried on with my school work as this was in the middle of my GCSEs. Since the diagnosis I have gone on to achieve 10 GCSEs all A*-C grade and am now studying A-levels and hoping to go to university next year. I hope my story can inspire anyone in the club who may be feeling down or demotivated. Just remember: keep smiling! I do… :)”
If you have received this and you are not yet a member of the This is Me club - why not join us now? Please email E: thisisme@shinecharity.org.uk for an application form. Then you will get copies of all the club newsletters, and you will get to hear about all the great events going on.
Report on the BRIT School visit... Do you remember that Rosie and Charlotte won the competition to go to BRIT School? Well, Rosie, Charlotte and their mums came to Croydon to see how the performing arts school, that has produced Katy Perry, Adele, Rizzle Kicks and many other pop stars, really works. “We were taken around the school by Darius and Imogen, two students who specialise in Community Theatre. You can take many specialisms there such as dance, music, theatre, but you have to do your GCSEs too! Darius and Imogen told us how doing theatre and
drama has helped with their confidence, and how creative arts like these are SO GOOD for including all people from all walks of life. That includes people with spina bifida and hydrocephalus too. DJ Krayz Legz came with us on the visit - he is a
successful rapper with spina bifida - he said he wished he had gone to a school like BRIT School! We had a look in the recording studios and how it all works: we saw the theatres and cafes, and we even did some vocal warm-up exercises together - lots of tongue twisters, which made us fall about laughing!� If you would like to do drama or music, there will be a community group near you that can help you get started. E: thisisme@ shinecharity.org.uk and we can try and put you in touch with a performing arts group that can help.
Competition time ... Do you like rugby? Would you like to meet the Wales national rugby squad?! We have a brilliant opportunity for ONE lucky rugby fan to go for a special tour around the Millennium Stadium - Wales’ national rugby ground. The winner and their parent/ carer will see the Welsh rugby team, watch them training in preparation for the Wales v. Argentina
game the following day, will get the chance to meet with some of the players and have pictures taken and get autographs. You will then be taken for lunch with some Shine staff and members. To enter, all you have to do is email E: thisisme@ shinecharity.org.uk and we will draw the winning email. It’s that easy!
Please note: you must be able to get to the Millenium Stadium in Wales for 10am on Friday 15th November. And, because it is a school day you MUST check with both your parent/ carer AND your school that you can be taken out of school for that day. Closing date for entries is November 10th. http://www. millenniumstadium.com
Fashion from Georgia! ... Girls - it’s all about being warm and cosy in oversized jumpers this autumn, as the weather starts to get chilly! Maybe add some spikes or studs to a collared shirt underneath to add a more dramatic look. The jumpers would look especially cute in autumnal colours such as deep damsons and rich purples. This look could be worn with trusty leggings and UGG boots to keep it comfy, or with jeans and boots again for a smarter look. With either bottom, the jumper would look perfect with a messy bun hairstyle. This look can be achieved with the use of a donut - which is really cheap and can be found in most beauty shops; even Primark!
Boys - tartan shirts are perfect for autumn! They are around in all colours but deep reds and navy blues are especially on trend this season. Team a tartan shirt with a pair of dark jeans and boots to look hot this autumn. Alternatively, wear jeans with trainers for a more casual look, perhaps meeting up with friends or going out to events such as the ‘This Is Me’ meetings ;) . Write to E: thisisme@ shinecharity.org. uk with your fashion tips if you use a wheelchair. Where is it best to shop to find comfy and
practical clothes that you can manage, that are also fashionable? Share your top tips with us!
Hannah ... “Hello, my name is Hannah. I live in west London with my mum, my sister, my dog Jessie and three guinea pigs. I am 14 and I have had hydrocephalus for the whole of my life. I also have visual impairment and I have had epilepsy since I was five. This means I get lost very easily when I am getting used to new routines and new places. To help me deal with this, I have learned how to use Hannah loves to read all the different landmarks around me. because I was always mixed up with a range Also, I have found it quite of different people; and, difficult to make friends as I have grown up, I with people. I was quite a have found that most solitary person at primary people become a lot more school, because I found accepting of others, which it quite hard to make also meant that I made friends. But when I started friends. secondary school (at 11) I found it a lot easier to I am an avid reader, and I make friends with people, go to our local library as
Bowels and Bladders We know that this can be an awkward issue for people with spina bifida. It can be embarrassing to talk about, can cause loads of inconvenience, and can be a real problem for people with the disability. It’s hard work for many with spina bifida to keep their bladders and bowels
under control; people sometimes have to use bags and catheters, sometimes people need operations - all just to go to the loo. It affects people in different ways - but there are some things you can do to make life easier for yourselves: - Try to drink plenty of
much as I can. I also attend RISE which is a sports club for less-able people, and on Thursday evenings I go to a youth club called Woodcraft, which offers lots of different activities, and involves lots of different people that get together to have fun. That’s all about me!”
water - it helps to keep your kidneys healthy, and keeps things soft in your intestines. - Eating a healthy diet with plenty of fruit and veg also helps you go to the toilet more easily. Try to avoid junk food! :( If a doctor prescribes something to help, take it. Continued on following page
Continued from previous page
- Although it can be inconvenient at times, if you should be catheterising regularly - DO! Looking after your bladder, and especially your kidneys, is REALLY important!!! - If you need to do things like bowel washouts, or have enemas, make sure you remember - set yourself reminders on your phone if it helps. - If you don’t get the feeling of needing to use the toilet, make sure you stick to your planned routine. - If you are having any type of trouble going to the toilet for more than a few hours, please let your parent, a teacher or an adult know; try not to be shy or ashamed as it’s really important. REMEMBER - you’re not the only one who needs to use the toilet, it’s just a bit different for you. If you have any questions about this - please email our expert Health worker Robin Barnatt at E: robin. barnatt@shinecharity.org. uk for confidential advice.
Louis ...
“Hi my name is Louis Richardson and I am 11 years old (soon to be 12 in November!!). I have hydrocephalus that is controlled by a VP shunt. My disability can sometimes bring me to a down, like when I see my friends playing rugby. But on the upside there are lots of sports which I can play, including football, and I have recently joined a crown green bowling team and I am loving it!! I have been awarded ‘match of the match’ 3 times since joining 4 months ago and this made me feel very proud. I attend mainstream school and my favourite subject is P.E. and my worst subject is Maths,
as I find this subject extremely difficult and frustrating. My hobbies are playing on the Xbox and supporting my football team Liverpool F.C. and also being a season ticket holder for the Huddersfield Giants. I am double jointed in my hands, so I can do funny movements. When people ask me about my scar and say is it a bald patch, I explain to the person I have had operations to keep me well and healthy. I am the only person in my school with hydrocephalus which makes me kind of special I guess...! But above with all disabilities, there will always be an ability!”
This is your club and we want to hear from you – email with your ideas and comments anytime.
thisisme@shinecharity.org.uk
Animation soon to be released by Shine: ‘Get inside my head’ is a short cartoon aimed at creating more awareness about hydrocephalus, because it is a condition which is often hidden. Ella Thomas, who has hydrocephalus and was keen to explain what life is like for her to a wider audience, does the talking on the film so it is her voice you can hear. The animation will be launched during Spina bifida and Hydrocephalus Awareness Week 2013 and we need you to share the link online as soon as it’s launched, so keep your eyes peeled! Here is a picture from the cartoon:
That’s all this time folks - please email E: thisisme@shinecharity.org.uk with your comments and ideas for the club. Don’t forget, all the latest information can be found at:
www.thisisme.org.uk
SEE YOU THERE! E: thisisme@shinecharity.org.uk Facebook is a closed group so you have to be invited – this makes it much more private and supportive. If you want to be invited then follow the link on the website and request your invite to the group.