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 been recognised. Conclusions?
- Bleeding from abnormal blood vessels can be problematic, especially in the gut, lungs and eyes and can be difficult to treat.
- Earlier recognition and more proactive use of potentially promising treatments are needed.
- Danazol, oestrogens, VEGF inhibitors (Avastin) and radiofrequency ablation could be considered.
- Guidelines for doctors in diagnosing and treating these abnormal blood vessels are in progress.
International collaboration is essential in shining a light on this rare disease and moving forward to find potential treatments. DC Action will continue to engage with the global medical community and spread the word about new advances – watch this space!