Rhys Brown (18), a resident of Warwick and a pupil of the Royal College of Music (JD), who is also studying at home with the Open University, has been shortlisted for the Young Epilepsy Inspirational Champions Award 2013.
The award, presented by Young Epilepsy recognises a particularly outstanding contribution made by a young person living with epilepsy towards improving the lives of others also living with the condition. He has been invited to the awards ceremony at City Hall, London on 26th March, which is International Epilepsy Awareness Day.
Rhys has managed to overcome many challenges with his condition and has had to work harder than most young people to achieve all he has. In raising awareness his particular focus has been on education and disability discrimination. He has spoken at an NUT conference on disabilities in schools and at the House of Lords All Party Parliamentary Group on Children. In addition Rhys has contributed to educational material and interactive self-management tools suited to modern technology.
Having experienced considerable ignorance and prejudice on account of his ill health Rhys says,
“It’s vitally important for those holding positions of responsibility not to act on outdated assumptions and prejudices. People must understand that a knee-jerk reaction based on ignorance can have exceptionally long term consequences. For this reason I encourage you to update your knowledge of these illnesses and support the Epilepsy Awareness and Action for ME campaigns”
There are about half a million people with epilepsy in the UK and many different types of seizures. About 1000 people die from epilepsy in the UK each year; half of which are from SUDEP (sudden unexplained death in epilepsy.) Many of these deaths are avoidable. Injuries can occur during a seizure and it may be difficult to summon help. While many seizures will be well controlled with medication, all those affected would have greater peace of mind if help could be summoned when needed.
With this in mind, Rhys and his family are working towards the research and development of an affordable wristband seizure alert, capable of summoning help if needed. Rhys's young cousin Caryn Cartwright died recently following a seizure, leaving behind a much loved husband and two very young children and such a device may have saved her life. To show your interest in this project contact: rhysjupiter@gmail.com or leave a comment.
In addition to epilepsy, Rhys also suffers from M.E. (Myalgic Encephalomyelitis) also known as CFS (Chronic Fatigue Syndrome) and this severely limits him on a daily basis. Any activity makes his numerous physiological symptoms worse, making his nomination for a Young Epilepsy Champions Award 2013 all the more remarkable. Having been virtually housebound and feeling constantly ill for well over two years since contracting a virus, he is determined to recover, to play sport again and to follow his musical aspirations but for this to happen, more Neurological and Bio-medical research is urgently needed into this severe & debilitating condition that is misunderstood and attracts derision due to ignorance. There also needs to be much more NHS funding allocated to supporting those living with ME/CFS and their carers.
There are currently 250,000 ME/CFS sufferers in the UK with 25% of them being severely affected, being bed-bound or housebound for months, or even years and in some cases leading to a long and painful death. ME/CFS is so much more than simply feeling tired all the time.
For further information on Epilepsy go to:
www.youngepilepsy.org.uk
www.epilepsy.org.uk
www.sudep.org
www.epilepsyresearch.org.uk
For further information on ME/ CFS go to:
www.actionforme.org.uk
www.meassociation.org.uk
www.tymestrust.org
www.25megroup.org
For advice on disability discrimination in schools go to:
www.ipsea.org.uk
