National Braille Week is organised by the charity Royal Blind (www.royalblind.org) and coincides with World Sight Day on 9^th October 2014.

World Sight day aims to focus global attention on blindness and vision impairment, with a rolling theme of universal eye health.  This year they also have a call to action for ‘no more avoidable blindness’.

Useful and up to date information about looking after your eyes and vision and conditions that can affect your eyes can be found at:

Visionmatters: www.visionmatters.org.uk

NHS: http://www.nhs.uk/Livewell/Eyehealth/Pages/Eyehealthhome.aspx

RNIB: http://www.rnib.org.uk/eye-health.  They provide information relating to your child’s education at: http://www.rnib.org.uk/information-everyday-living/education-and-learning.

Action for Blind people: https://www.actionforblindpeople.org.uk/about-us/.  To see their resources for children and young people please click here.

 National Braille Week aims to raise awareness of the importance of Braille and other alternative formats that can open up the written word to people with visual impairments.

Braille is a system of touch reading and writing in which raised dots represent the letters of the alphabet and numbers, as well as music notes and symbols.

RNIB have a library of children’s/young people’s books in large print, braille or audio that you can borrow – please click here or call 01733 375333.  They also provide information and advice about ebooks and ebook readers.

This year Backcare Awareness Week is focussing on office workers – ensuring they are aware about taking regular breaks, workstation and seating to suit their requirements and stretches that can help with muscle tension.

As a parent carer, however, you may have to provide physical support to your child, such as helping them out of bed, into a wheelchair, in and out of the shower/bath, getting dressed, etc.  This can take its toll on your own health and in particular can put considerable stress on your back.

We found the following information that you may find useful.  It is provided by the British Chiropractic Association and is aimed at carers.

Golden rules for carers
•    Think ahead – assess each situation and look for the best and easiest way to achieve the desired result, this may mean using any available equipment whether it be for specialist lifting or a simple sack barrow for moving boxes of supplies
•    Follow the weight – always try and face the direction in which you want to carry any weight – your body is strongest when you are square on to the weight
•    Take care when lifting – never lift while twisting from the waist.  Bend your knees, try to have a relaxed, straight back and if possible, brace your abdominal muscles. For added stability make sure that your feet are about a shoulder width or more apart before lifting
•    Ask for training – whether you are caring in a formal setting or helping someone at home, make sure you have been properly trained in how to use any equipment
•    Supportive shoes are essential – wear good, soft-soled shoes that are supportive and have a good grip on the ground
•    Take regular breaks – if doing a repetitive task, take a break every 20 minutes and do some simple stretches to relax your muscles.

Carers – Straighten Up
“Formal care settings should have lifting and moving equipment available and staff should always make sure that they have been trained in the proper use of all equipment. Home carers should make sure they receive home assessments for the person they are caring for as equipment can be loaned out – this will require appropriate training for proper use.”

The British Chiropractic Association has developed a very simple three minute exercise routine entitled ‘Straighten Up UK’, which is really easy to incorporate into daily life to help strengthen the spine and improve posture. The exercise routine can be accessed on the BCA website here:http://bit.ly/straightenup

The pituitary gland is often referred to as the ‘master gland’ because it controls several other hormone glands.  It sits behind the bridge of the nose, below the base of the brain.

Problems with the pituitary gland can cause a range of disorders.  In children the most noticeable effects are on growth – either resulting in abnormally reduced growth (hypopituitarism) or abnormally increased growth (acromegaly). Mood and the ability to focus and concentrate can also be affected, as can sexual development.  If the problem affects the Thyroid gland, it can cause;

• hyperthyroidism, with symptoms such as an enlarged thyroid gland in the neck, a rapid pulse, weight loss, nervousness and a sensitivity to heat.
• Hypothyroidism, with symptoms such as sensitivity to cold, dry skin, tiredness, constipation and irregular periods in girls.

The Pituitary Foundation is a UK charity which provides a wealth of information about Pituitary and endocrine gland disorders.  They have a webpage specifically for parents/carers at: http://www.pituitary.org.uk/support-for-you/carers-and-parents/parents/.  You can also call their helpline on 0845 4500375 Monday to Friday, 10am – 4pm.

During Pituitary Awareness Month this year the Pituitary Foundation are focussing on improving understanding of adrenal crisis experienced by steroid dependent pituitary patients.  This is a targeted campaign aimed mainly at health workers, calling for increased awareness about patients who are suffering from an episode of acute adrenal crisis – a potentially life threatening situation.  Please visit their website for further information.

Systemic Lupus Erythematosus (SLE) or ‘lupus’ is a disease that causes inflammation in many different parts of the body. It can involve the skin (causing a rash), the joints (causing arthritis) or even internal organs such as the heart, lungs and nervous system.

The cause of lupus is unknown, but it involves the immune system, which for some reason, attacks the body’s own tissues.  It is a chronic illness and sufferers can have periods where symptoms flare up or subside.

Symptoms

• Chronic fatigue or tiredness
• A butterfly shaped rash over the cheeks and nose
• Sensitivity to sunlight or fluorescent lighting can cause a rash or symptoms to flare up
• Mouth ulcers, which are usually painless
• Joint problems – pain, stiffness, swelling
• Other symptoms may be present if internal organs are affected.

Blood tests help to diagnose lupus and monitor its activity.

Treatment
There are a number of medications that can help in lupus.  Common drugs include anti-inflammatory steroids and immunosuppressants.

Support and information
LUPUS UK, jointly with the UK Juvenile Systemic Lupus Erythematosus Study Group, have produced the bookletMy Lupus – What I Need to Know – A Young Person’s Guide.

They also have an informative NHS video about lupus in young people at http://www.lupusuk.org.uk/young-people.

World CP Day is a global event designed to gather ideas from people around the world and make the best of those ideas a reality.

Post an Idea: Each year people with cerebral palsy, their families and supporters are asked to post an idea for something that would change their world. They have just 1 minute to present the idea – in a video or text – and post it on the World CP Day website from mid-July to 31 October.