A rare condition, Marfan syndrome often travels unnoticed through everyday life and can remain dangerously undiagnosed. This February we hope to reach The Missing 15,000, meaning the Marfan folk who are not known to our charity. Of these 15,000, we fear that at least 8,000 are living unknowingly, and potentially life-threateningly, with the condition. Knowing the signs and symptoms of Marfan is critical to life and this February we hope to reach beyond our loyal supporters.
Share our videos. Share our Posters. Share our Stories!
Spread the Word!
Engage family, friends and colleagues in conversation about MFS. Have they heard of it? Do they know the signs?
Don’t be afraid to talk to your GP or other medical professionals. Many will have studied the syndrome in medical school, but others may have not, or may have out-of-date understanding.
Introducing Joanne Jessup, the Trust's new Clinical Nurse Specialist. In this short video, Joanne explains Marfan syndrome and the steps towards obtaining a diagnosis.
if you suspect that you may have Marfan syndrome, please feel free to get in touch by emailing [email protected] and/or complete the form at the bottom of this page
What Does Awareness Mean to You?
With many worthy causes competing for attention this momentous month of February, we wonder what the idea means to you? After all, awareness is not much use unless put into practice. In the attached video, several supporters describe the different and disparate ways in which awareness of Marfan syndrome would help them.
Some first hear the words “Marfan Syndrome” across the doctor's consulting table; others have grown up knowing them. A few are introduced to the term after emerging from life-saving surgery. Read Julie's Story:
“If only I’d known” is sometimes the saddest phrase of all. Jonathan "Jonny" Edwards displayed the typical hallmarks of Marfan syndrome but it went undiagnosed and he died at just 23.
Marfan and Medicine
Essential to life is diagnosis and critical to this is awareness. But were the young doctors alert and attuned to the signs of Marfan syndrome at the recently held sessions for trainee registrars and physicians in Brentford? Find out in Daniel’s article describing the six days he spent as a patient volunteer at the PACES Ahead sessions.
What Inspired Our Sherlock-Holmes-themed Awareness Image?
In his first literary outing, Sherlock Holmes deployed his theory of deduction to unravel a mystery that had crossed continents. "A Study in Scarlet" introduced Holmes to the world, pitting his forensic reasoning against the revenge-fuelled murderous antics of sympathetic baddie Jefferson Hope. Sir Arthur Conan Doyle was a physician, and famously clinical in his descriptions of his characters, creating in Jefferson Hope a physically vivid villain of tall stature, ruddy complexion with susceptibility to epistaxis. Hope also suffered a thoracic aortic aneurysm. Did Jefferson Hope have Marfan Syndrome, we wonder?
To discover further famous folk with Marfan syndrome, follow this path