It’s Jeans for Genes day

Today is Jeans for Genes day. Will you be doing your part to help children with genetic disorders?

It is estimated that one in 25 children is affected by a genetic disorder. 30,000 babies and children are newly diagnosed in the UK each year.

Some genetic disorders are apparent at birth while others are diagnosed at different stages throughout childhood, and sometimes into adolescence.

Money raised each year helps organisations carry out activities for children with genetic disorders. You can read about how Genetic Disorders UK/Jeans for Genes grant programme here.

The most common genetic disorder everyone has heard of is Down Syndrome, but less common is Fibrodysplasia Ossificans Progressiva (FOP). FOP is one of the rarest and most disabling genetic conditions known to medicine, causing bone to form in muscles and other connective tissues such as tendons and ligaments.  Bridges of extra bone develop, in many cases, across the joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. You can learn more about FOP here.

Another rare condition is Xeroderma Pigmentosum (XP). One of the co-founders of Teddington Trust is the mother to a boy affected by this condition. Teddington Trust provides UV blocking film, hats and protective gloves for those affected as well as support and guidance.

XP is characterised by an extreme sensitivity to ultraviolet radiation (UVR) which affects less than 100 patients in the United Kingdom and equally low numbers around the world.Ultraviolet Radiation (UVR) is present during all daylight hours, found in many types of artificial lighting and even lightning. Unless patients with XP are protected from UVR, their skin and eyes will be severely damaged and this can lead to skin cancer. XP patients are at a 10,000 fold increased risk of developing skin cancer than the general population and often this starts at a very young age.

About 30% of people with XP also develop neurological abnormalities which can range from learning difficulties, hearing loss and eye sight problems to loss of gross motor skills and mobility. 

There is no cure for XP, but much can be done to prevent and treat some of the problems it causes.

Protection from all sources of UVR is required, including total daylight avoidance via specialised clothing and sunscreens. A significant commitment to lifestyle changes is also required to mitigate against the risk of exposure and combat its effects. People with XP must also undergo frequent skin, eye and neurological examinations and have prompt removal of cancerous tissue.

Thousands of these genetic disorders affect as few children in the UK as FOP & XP and it is for this reason that it is so important to support this day.

If you haven’t been able to do your part today you can host a Jeans for Genes day anytime to help children with a genetic disorder.