3.5 million people in the UK are affected by a rare condition in some way within their lifetime. With 7,000 different conditions and new conditions regularly identified, as research advances, there are real challenges in coordinating healthcare, diagnosis and treatment.

One of those rare conditions is Stevens-Johnson syndrome. Marian Adejokun, who lives with the syndrome, discusses her experience and the long journey to diagnosis, as well as the work she is doing to raise awareness of the disease — as part of our news-style programme, Rare Conditions: The Stories Behind the Stats.

Marian is joined by Louise Fish, CEO of Genetic Alliance UK, who shares how typical these diagnosis experiences are for those living with rare conditions. Louise also discusses the UK Rare Disease Framework and its set of ambitions around getting faster diagnosis, better coordination of care, better access to treatment and support, and improving awareness among healthcare professionals.

Marian Adejokun’s Stevens-Johnson diagnosis came about following a severe skin reaction to eye drops.

Explore more interviews and partner films about rare conditions on our Rare Conditions: The Stories behind the Stats programme page.

You can also read about the people behind the stats and how their conditions impact their lives, in our article, Rare diseases: The real people behind the stats.