Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Rare disease day improves knowledge amongst the general public of rare diseases whilst encouraging researchers and decision makers to address the needs of those living with rare diseases. www.rarediseaseday.org
In support of this day Total Body Orthotics would like to take the opportunity to talk about a rare disease close to our hearts, Epidermolysis Bullosa (EB). EB is a rare genetic skin condition that causes the skin to blister and tear at the slightest touch, children born with this condition are often called ‘butterfly children’ because their skin is as fragile as a butterfly wing. There is currently no cure for EB, so treatment aims to relieve symptoms and prevent complications, such as infection. On going research and support the condition is vital. To find out more visit Debra which is the national charity that supports individuals and families affected by EB.