If it is your brother or sister who is unwell, your parents might not have as much time as they’d like to spend with you, you could feel left out. You might not be able to go out as much as your friends. Perhaps you find it hard to make friends because people don’t understand what you are going through. Young Carers’ Projects offer Young Carers a break from their caring role to meet other young carers who understand. They also provide support, counselling, advocacy, fun trips and activities.
(Source of information – Swansea, Neath Port Talbot Crossroads Young Carers Project, Wales, UK)
Young Carers’ Support. (UK only)
Young Carers.net
http://www.youngcarers.net/
Princess Royal Trust for Carers
http://www.carers.org/
Crossroads Care
www.crossroads.org.uk
Barnardo’s
www.barnardos.org.uk
Children’s Society
http://www.childrenssociety.org.uk/
Action for children
http://www.actionforchildren.org.uk
For schools –
The Princess Royal Trust
for Carers
and The Children’s Society’s
‘Schools resource pack’
http://professionals.carers.org/young-
carers/articles/schools-resource-
pack,6282,PR.html
This resource helps schools identify and support Young Carers, and includes many time saving tools.
(It is a free to download resource for any school to use.)
So what is IH?
IH is an invisible illness where the person looks “fine” when they are not!
That is why I am taking this opportunity to help raise awareness for IH and the Intracranial Hypertension Research Foundation (IHRF), which is working hard to improve the lives of people affected by IH.
“Intracranial hypertension” literally means that cerebrospinal fluid (CSF) pressure within the skull is too high. Chronic intracranial hypertension (IH) is a serious neurological disorder that can cause severe headaches, vision loss, blindness and life-altering disability.
Anyone can develop chronic IH at anytime in life.
There currently is no cure.
Old names for IH include Pseudotumour Cerebri and Benign Intracranial Hypertension. Most people have never heard of it, including many in the medical profession. If more people knew about IH, then patients might get treated with the compassion they deserve!
IH is sometimes caused by an existing medical condition, but it often occurs without a known cause. Idiopathic IH (IH that occurs without a cause) is considered a rare illness affecting 1 in 100,000, though the rate of incidence is as high as 1 in 5000 for some people.
Millions of other people have a condition or disease such as traumatic brain injury, stroke or kidney failure, in which IH can play a role.
There has never been a drug specifically developed to treat IH. Treatment options are limited. For some people, medication can help control intracranial pressure. But for others, the only choice is painful surgery to insert a shunt to drain the excess fluid from the brain. Since shunt surgery only has a 50% success rate, this frequently means many surgeries, with the accompanying risks. If sight is at risk, a person with IH often has to undergo optic nerve surgery to save their vision.
IH symptoms include:
Severe headaches (as if your head is in a vice)
Vision loss and / or blindness,
Optic nerve swelling,
Pulse – synchronous tinnitus,
Sore/ stiff neck,
Back pain,
Memory/ cognitive problems,
Fatigue,
Malaise,
Dizziness,
Light-headedness,
Photophobia,
Noise sensitivity.
Chronic IH is life-altering, and robs people of their once happy and healthy existence.
No two cases are the same, making it a difficult condition to manage.
For more information on IH,
Please go to the IHRF’s website
http://www.ihrfoundation.org
Source of Information – IH Research foundation.
Thank you for taking the time to read this information!
IH Research Foundation
The IH Research Foundation is the only non profit organisation in the world devoted to supporting and funding the medical research of chronic IH. Their mission is to discover why IH happens, along with new, effective therapies to treat the disorder.
Their ultimate goal is to find a cure.
Crossroads Care
Crossroads Care is Britain’s leading provider of support for carers and the people they care for. We work with more than 41,000 individuals and their families, helping carers make a life of their own outside caring. We provide flexible services to people of all ages and with a range of disabilities and health conditions.
***The IH Research Foundation and Crossroads Care benefit from a percentage of the royalties from all book sales. ****
Acknowledgements
To my Husband. We didn’t know what lay ahead of us all those years ago when we got married. It’s been a difficult journey, but it’s made us stronger. IH has changed so many things in our lives, but it’ll never change my love for you. Your courage inspires me to help the IHRF as much as I possibly can in their quest to support IH sufferers and one day find a cure.
To Christopher and Adele-Caitlin. You are my inspiration! You are such caring, wonderful people and I’m honoured to be your Mother. You’ve had to deal with so many difficulties from a young age, yet each time you have shown compassion and maturity. I am so proud of you both. Thank you for being you. I love you!
To all my family and friends. Thank you for always being there and for your continuous love and support. You have given me the strength to carry on when life has been so difficult. Thank you from the bottom of my heart!
To Paul. Thank you for your continuous support with the Caitlin’s Wish website and the fantastic publicity photos.
www.phrphotography.com
To Claire. Thank you for being such a good friend and for agreeing to be the Illustrator for Caitlin’s Wish. The illustrations are perfect, Thank you!
To. Crossroads Care. Thank you for all that you do for carers. You are a lifeline to so many! A HUGE Thank you to the Young carers project; you’ve brought light back into my children’s world by enabling them to befriend other young carers and just be kids! www.crossroads.org.uk
To IH Research Fdtn. Thank you for all that you’re doing to educate people about IH, and your efforts to find better treatments and a cure. Thank you for all the advice and information on your website; it really helped us learn about IH. Thank you so much for your continued support, you’ve helped us so much and we’re very grateful! www.ihrfoundation.org
To anyone affected by IH. Keep spreading awareness of IH! Together we CAN make a difference! Every case of IH is different BUT the common denominator amongst you all is the courage and strength of character that you all have in dealing with this cruel, painful and disabling condition. I’ll continue working hard to raise awareness for IH, I promise! I want to say a special Thank you to the IH patients who reviewed the Second Edition for us.
THANK YOU!
To Young Carers. You are all heroes in my eyes! Thank you for all that you do caring for loved ones, I know it isn’t easy and life can be really tough sometimes, but your dedication doesn’t go unnoticed! You are amazing young people, and I wanted to take this opportunity to say THANK YOU!
I want to say a special Thank you to the Young Carers who reviewed the Second Edition for us. THANK YOU!
Thank you to Emanuel Tanne, M.D. Co-Founder and President of the Intracranial Hypertension Research Foundation, Angela Roberts, Director of Wales Crossroads Care, Mr. Karl Napieralla, Director of Education for Neath, Port Talbot, Wales, UK, Neath Port Talbot Young Carer’s’ Forum, Wales, UK and Sonia Binge, Childr
en with Disabilities service, Berkshire, England, UK for endorsing Caitlin’s Wish. Your support means so much to us, Thank you!
I want to say a huge thank you to everyone who has supported ‘Caitlin’s Wish’ since we published the First Edition at the beginning of 2010.
The response we’ve had has been overwhelming, and you’ve been so kind.
Thank you!
For all the latest information,
Please go to the
Caitlin’s Wish website
www.caitlinswish.co.uk
You can also find us on
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