Still have Christmas shopping to do? Planning to buy something in the sales? Raise money for your favourite charity at no cost to yourself by following these five easy steps: Go to https://www.thegivingmachine.co.uk/ Search for DC Action (two words) in the ‘find causes’ box Click on ‘support’ Download the small app[…]
DC Action was privileged to be part of the ‘Vascular Complications in Dyskeratosis Congenita’ workshop hosted by the US National Cancer Institute in October. Fifty DC experts from all over the world, representing various specialities, along with patient advocates from DC Outreach, our US sister organisation, met to discuss this problem, which has only recently[…]
A recent study has suggested that Metformin, a cheap and widely available tablet used to treat common conditions such as diabetes, could have a role in preserving telomere length. Metformin has been shown to promote telomere repeat-containing ribonucleic acid (TERRA). TERRA is a molecule that protects and preserves the telomeres, via activation of a natural chemical present[…]
Photo credit: The Times The Times reports that a pioneering gene-editing treatment is likely to have been successful in treating a little girl suffering from leukaemia. This follows an article last year, which first reported on the procedure. Two-year old Layla could potentially be the first person in the world to have been saved[…]
In an interview to promote her new book, Elizabeth Blackburn, winner of the Nobel Prize for her work on telomeres, describes the small lifestyle changes that can make long-term changes to telomere length, and to healthy lifespan. Moderate exercise, 45 minutes of walking three times a week is as good as marathon running; stress reduction;[…]
Since dyskeratosis congenita (DC) is so rare, getting diagnosed is a major problem. Blood tests which could help, such as telomere length, are not available to most doctors, so it is likely that many people with DC never know their true diagnosis and therefore may not receive the best treatments. One approach to rectifying this[…]
Arteriovenous (AV) malformations revealed as additional cause of lung disease in dyskeratosis congenita. Arteriovenous (AV) malformations are joins between arteries and veins. They bypass the tiny capillaries that deliver oxygen to the tissues. Recent reports suggest that AV malformations in the lungs, as well as in the intestine, could be a problem in dyskeratosis[…]
Pulmonary fibrosis is a serious complication of dyskeratosis congenita (DC). Lung function tests are ‘blowing tests’ where the patient blows into a machine to measure how well the lungs work. These tests can predict lung problems before they develop, which is important given the possibility of future treatments such as pirfenidone and nintedanib (see ‘Treatments’[…]
Each year in December, the British Thoracic Society hold an annual meeting to update respiratory physicians and scientists on the latest news and developments in research and treatment of lung disease. DC Action was delighted to see that Professor Christine Garcia from The University of Texas Southwestern Medical Centre in Dallas was invited to[…]
Mieke and Hilary from DC Action were lucky enough to represent DC Action at the biennial DC Outreach meeting at Camp Sunshine in Maine USA this month. 25 families affected by dyskeratosis congenita, their supporters and medical advisors met for three days of fun, information and mutual support. We are hugely grateful for the medical[…]