Danazol is believed to slow down the shortening of telomeres that causes the problems associated with dyskeratosis congenita (DC). A study in 2015 appeared to support this: people treated with danazol actually had lengthening of their telomeres, as well as better blood counts, better lungs and better liver function. Many doctors believe that low dose danazol could have a similar benefit but with much less chance of side effects.
This study is open to anyone over the age of three with a known DC mutation and low blood counts, liver or lung problems, and who has never had a transplant. Those taking part will remain under the care of their own medical team, but would additionally travel to the US National Institute for Health for 4 assessment visits.
More details are available at:
DC Action is clarifying the eligibility of UK patients and looks forward to hearing more in due course.