"Once seen never forgotten". Passing frequently unnoticed through GP surgeries and A&Es is a potentially life-threatening condition. Marfan syndrome is still hiding in plain sight. February marks Marfan Awareness Month and we ask you to help us educate the medical establishment about this syndrome, to save lives. Once a doctor meets a person with Marfan syndrome, the doctor never forgets, as our Medical Director Dr Anne Child has remarked many times.
As the sole charity in the United Kingdom dedicated to improving and saving the lives of those with Marfan syndrome, the Marfan Trust is increasingly approached by people who remain undiagnosed and unsupported by their GP. They suspect they have the condition and approach our Trust seeking help, guidance, and the route to clarity and diagnosis.
· 25% of calls to our Charity are from those who are undiagnosed, and unsupported by their GP.
We at the Trust are using Marfan Awareness Month to spread the word on our condition - its signs and symptoms. Opportunities exist everywhere in everyday life to diagnose this syndrome, and the earlier it’s caught the better. From opticians and cobblers to GPs and A&Es, these professionals can easily identify Marfan from its physical hallmarks: detached lenses, long fingers and feet, excessive height, and stretch marks. We are running a series of articles, interviews, literature and case studies throughout February, to enlighten the world and prevent unnecessary and premature death.
As the family of one young man said: "J was tall and thin, his rib cage stuck out (pigeon chest), his toes curled, he had stretch marks on his back and he was able to touch his wrist with his thumb. His wing span was longer than his height. Had we heard of Marfan syndrome we may have been able to join the dots. J would have been tested and probably undergone surgery." J died two years ago of an aneurysm. Prior to this he was fit and healthy.
Please help us to help doctors join the dots! Download our Free Pamphlet today to distribute amongst GP and dental surgeries and anywhere else you think relevant! Let's spread the word far and wide!
Stories and Articles highlighting the urgent need to Make Marfan Matter and Make Medicine Aware:
“I don't ever want another mother to feel like I do and if I could save one life I would give my right arm."
- Signs and Symptoms, a Deadly Secret?
Recognising the visible features of Marfan syndrome is a route to identifying the invisible, potentially deadly, feature...
- Check In; Check It Out
Awareness is so important, as early diagnosis of Marfan syndrome can ensure correct management and save lives.
- Steffanie's Story
This story is tragically emblematic of the urgent need for early diagnosis of Marfan syndrome. Capturing Marfan syndrome in the present generation could save the lives of future generations.
- Lucy and Marfan Awareness
A condition as complex as MFS can leave you feeling isolated and alone, especially when doctors cannot help you navigate your medical journey...
- Alert Medics to Marfan Syndrome
- The GP Who Came To Tea
Health should not hinge on happenstance and luck, but sometimes it does. An overheard conversation, a chance meeting, or an unexpected visitor can bring a life-saving diagnosis. Julie wrote to the Marfan Trust in response to Jonny’s story to tell us of the trainee GP who unexpectedly came to her house for tea and in doing so saved her life.
- The Professor Perspective
We gave the final word to Professor Pepper on the critical importance of early diagnosis in a genetically driven disease like Marfan syndrome.