Campaigning for the approx. 2 million people in the UK
adversely affected by modern lighting.
Do consider adding your name to the Lightmare petition
Co-ordinator : If you are interested in taking on the role, please see page 'NEW CO-ORDINATOR'
In the meantime please contact the Webmaster who will either answer your query or forward it to someone who will
Technical Adviser & Webmaster: Fr John Ryder, The Vicarage, Church Hill, Godshill, Ventnor, PO38 3HY
email@example.com Tel: 01983 300421
Eclipse Support Group
XP Support Group
and is supported by the national Autistic Society, Research Autism, and Right to Light.
LupusUK is the only national registered charity supporting people with systemic lupus and discoid lupus and assisting those approaching diagnosis.
Systemic lupus is a chronic and presently-incurable illness of the immune system, a condition in which the body's defence mechanism begins to attack itself through an excess of antibodies in the blood stream causing inflammation and damage in the joints, muscles and other organs.
The name systemic lupus implies that almost any organ or system within the body might be affected and lupus is perhaps the classical multi-symptom illness, deserving of far greater priority and investigation by the medical community.
Discoid lupus is a condition of the skin alone, and in a very few patients can develop into systemic lupus.
Lupus may be triggered by various means and can present in a bewildering number of ways, even to the extent of mimicking other diseases such as rheumatoid arthritis or multiple sclerosis.
The cause of lupus is not positively known though research has provided evidence implicating heredity, hormones and infections including viruses.
With its many symptoms, lupus can often be overlooked by a GP or consultant which may delay final diagnosis and a vital start to necessary treatment which can contain the disease and hopefully limit potential damage to the kidneys, heart, lungs or brain. Those diagnosed usually remain in medical care and receive ongoing treatment. Many symptoms will have less impact but there may be side effects.
Lupus can adversely affect the lives of sufferers and their families, and influence relationships with friends and business colleagues.
Eclipse is a sub-group of Lupus UK formed to offer practical support and advice to those lupus patients who suffer from extreme light sensitivity. It has a regular page in the Lupus UK magazine "News & Views", produces a Contact List for those members who wish to be in contact with each other, and a Product List with products (and where to get them) as well as advice on how to screen your life from light. It also produces badges with the Eclipse Logo and the words "MADE ILL BY LIGHT". To become a member and for copies of these lists contact Lupus UK direct, for badges or advice contact Brenda Ryder at firstname.lastname@example.org , by post The Vicarage, Godshill, VENTNOR PO38 3HY or by phone 01983 840895.
XP Support Group
XP is a rare genetic disorder that causes extreme sensitivity to the sun's ultraviolet rays. Unless patients with XP are protected from sunlight, their skin and eyes may be severely damaged. This damage may lead to cancer of the skin and eyes. There are believed to be 100 cases of XP in the UK today, many of which are undiagnosed and currently untreatable.
The XP Support Group was founded by parents of children with XP. It aims to relieve the needs of those affected with XP, and other related conditions, and their families. The XP Support Group raised funds for research, provides grants for UV protection equipment and products, and assists families to attend respite in a protective environment.
ES-UK Electrosensitivity UK
Electrosensitivity (ES) is a condition where people develop allergic-type reactions to the electrical and magnetic fields generated around electrical equipment. It is also known as Electrical Sensitivity or Electromagnetic Hypersensitivity (EHS). Different people react to different parts of the electro-magnetic spectrum, which ranges from the high-frequency pulsed microwave radiation emitted by mobile phones, mobile phone masts, wireless networks and DECT cordless phones, to low-frequency power fields around domestic wiring.
ES is often progressive. Over time the sufferer may become sensitive to a wider range of frequencies and/or their reactions may become more severe.
Migraine Action Group
For over 50 years national charity Migraine Action has been supporting people affected by migraine, a condition which The World Health Organisation has classified amongst the top twenty most disabling lifetime conditions. Much more than ‘just a headache’, symptoms of migraine can include nausea and vomiting, visual disturbances, confusion, numbness of the limbs and a sensitivity to light, sound or smell. Migraine Action’s services include a telephone helpline, a quarterly members’ newsletter and organising education days throughout the UK. It works to bridge the gap between people affected by migraine and the medical world by providing unbiased information on all aspects of migraine and aims to raise public awareness about the realities of living with this much-misunderstood condition. In addition it raises funds to support specialist migraine clinics and funds research into the diagnosis, treatment and cure of migraine and other headache disorders. It acts as the voice of migraineurs and campaigns on issues of importance to those affected, including the impact of the ban on incandescent light bulbs for light sensitive migraineurs. More information can be found at www.migraine.org.uk or by calling 0116 275 8317