An uncommon syndrome, #Marfan produces unusual signs & symptoms. Fingers are often long & spidery, & the mouth highly arched, like a cathedral. When several teeth are lost it is hard to mould a denture to fit this specific shape, as a supporter has found: tinyurl.com/5edda8kf

Not just a cosmetic concern but often a medical one, #PectusExcavatum can be a sign of #Marfan . Navigating the emotional & medical journey of this sometimes life-impairing problem can be tricky. New charity Pectus Matters discusses this at our webinar: tinyurl.com/hf3vtwkw

Joanne's Drop-In resumes this Tuesday - tomorrow - at 7pm. Why not pop in for an informal conversation on #Marfan matters. It's an opportunity to meet your fellow supporters and share common concerns in a friendly environment. tinyurl.com/ywxbacxa

Endlessly evolving, medicine is increasingly personalised. Emblematic of this is PEARS, conceived by Tal Golesworthy. Unhappy w/ the existing surgical solution to his expanding aorta, Tal created an alternative & was the first recipient of his invention. tinyurl.com/yck2r5e9

Emerging from her interview with Jim Al-Khalili for BBC Radio 4’s #TheLifeScientific , to be broadcast in July. Dr Anne Child, Medical Director of the #Marfan Trust, discussed her uniquely fascinating life and career! We will remind you nearer the time!

#MarfanMondays Wayne's Story
A poignant anniversary and a rush of memories. It is 21 years ago that Wayne Johnston died of an #AorticDissection , leaving a family bereft. His legacy lives on in his wonderful son Lewis, and his cookbook, A Zest for Life. tinyurl.com/2fpapyz7

Kris O'Neill turned a long-held ambition into the most exciting reality. With his late brother Liam, he dreamt of a fundraising car rally that would help Marfan patients. Today Kris and his ‘bawzers celebrate 10 years of the Cannonbawz Run. We wish we could join you! Thank you!

Sleep repairs your mind and replenishes your energy. Constant interruptions to this precious process can be damaging and life-impairing. #Marfan syndrome is associated with a high prevalence of Obstructive Sleep Apnoea. What is it? tinyurl.com/58n9dkmp
#ObstructiveSleepApnoea

From the heart to the head!
After extensive research and 120 patient interviews, award-winning cardiovascular nurse Rosalie Magboo will present the results of her study on the #psychosocial aspects of living with #Marfan , before & after #HeartSurgery . tinyurl.com/bdffzzvx

#MarfanMondays
This year's Binfield Run is a poignant one for Karen. It will be the first without her quiet and calm husband greeting her at the finishing line. John died in September 2023 of an #aorticrupture . Read Karen's story and campaign: bit.ly/3Jj3wS9
#aortaed

Parents' Corner resumes this Tuesday, 16 April. It's a chance to meet similarly situated parents and discuss common concerns in a friendly environment. Join a supportive network of like-minded parents!

bit.ly/3PVBksh

Looks are not skin deep but an outward expression of what lies underneath. Our genetic make-up (genotype) influences our physical characteristics (phenotype) including our height & eye colour. But in #Marfan , the characteristics are very variable: bit.ly/3xznANw

Seeking supplemental help is a natural response to the news that you are ‘deficient’ in something. In #Marfan , the body’s connective tissue is weak so it’s tempting to try & strengthen it somehow. Would the supplement manganese work, a supporter asks? bit.ly/4aQ7IEE

Making a big difference to our small charity, Marfan Trust fundraisers are unstoppable in their support. Today we celebrate Brooke who ran the Brighton Half Marathon in memory of her uncle Jason. #Marfan is a family affair for Brooke. Read her story: bit.ly/3J9d6a7

Nervously awaiting a momentous hospital appointment & going over your questions for the doctors as the wait drags on & on. Then you find out it'd been cancelled wks ago & you hadn’t been told. The theme of poor admin has marked Lucy’s hospital experience. bit.ly/3VQ83TM

A stark Friday fact created in response to an alarming article in the Guardian - bit.ly/43NhS6J - on the devastating consequences of failing to give dental patients w/ heart conditions antibiotic cover. Order your IE alert card today. bit.ly/3VMy2LO #marfan

A one-stop source of information, leaflets are an invaluable tool and today we are introducing #Marfan ’s ‘connective cousin’, #LoeysDietz syndrome, into our pamphlet mix. A big thank you to Darran, Debbie and Georgie for giving a face to the condition. bit.ly/3U46q3l

Taking #Marfan syndrome to the rooftop of the world! Thank you so much, Gib, for your breathtaking feat. Your support is invaluable. Thank you!!!!

#MarfanMondays Joanne's monthly drop-in resumes this Tuesday - tomorrow. Why not pop in for an informal conversation on all things Marfan. It's a chance to meet fellow supporters, share common concerns and swap tips in a friendly environment.
tinyurl.com/ymrrcnkj

Happy Easter! Spring blossoms abound on this rather chilly Sunday. Have a lovely time, however you spend it!