Adapted every Wednesday into Dr Child’s Casebook, our Helpline has started a conversation between our supporters. Peer-to-peer support is invaluable, and something we hope to offer more consistently and regularly. A recent Casebook, Why Me?, telling of an 8-year-old Marfan child who feels isolated and frightened among his unaffected siblings, prompted a mutually beneficial encounter between two parents and their young daughters:

I cannot tell you how wonderful it was yesterday for my daughter to connect with D’s daughter The girls chatted for 2.5 hours despite being 3 years apart in age, and I cannot tell you how happy it made A knowing there was someone out there in the world that is similar to her!  It has also been great talking to another parent about our worries and concerns and again knowing what it is like and how best we can support each other.

It made me realise how powerful it can be for children and parents too to be connected and chat about how this syndrome makes them feel, I would love to try and help further with this area of connecting and chatting to people who might feel in need of support!  If there is anything I can do please let me know, and in the meantime many thanks for connecting us!

If you wish to join the conversation and get in involved in peer-to-peer support, please contact me, Victoria, at [email protected]

Operating seamlessly and ceaselessly during the pandemic, our Helpline is a port in a storm. A readily available source of comfort, clarity and rarefied medical knowledge. Increasingly busy, it has received over 240 calls since June 2020; calls that were disparate in nature, reflecting the variability of Marfan syndrome. While largely from the UK, patients also contacted us from France, Sweden, The States, Pakistan, South Africa and Iran, showing that we’re a niche helpline with global reach! Amongst the assorted enquires one theme dominated, the need for a definitive diagnosis of MFS, or a similar connective tissue disorder. This continues the momentum of our awareness month campaign, edging us closer to finding the Missing 15,000.

Of the 240 calls, 18% were from those seeking clarity on their condition and a diagnosis. COVID and vaccine-related worries constituted 10% of enquiries whilst a further 10% needed to discuss matters of the heart. Pectus chest abnormalities, scoliosis, metatarsalgia, dislocations and other skeletal manifestations of MFS were common problems whilst the paediatric care of Marfan syndrome also featured. Advice was sought on the eye and the intrinsic value of surgical intervention, and guidance was sought on pregnancy and the attendant aortic worry. It’s good to talk and some patients simply wanted to do that, to discuss their condition in general terms. Medical advice sometimes gave way to practical tips when several supporters sought guidance on how to obtain insurance and mortgages. And some approached us in the wake of a bereavement, seeking emotional support. Over the years Dr Child has dispensed comfort and solace to those struggling with loss, recently writing an article on Bereavement; to read more, click here

The Marfan Trust is registered in England and Wales under charity number 328070 at c/o 24 Oakfield Lane, Keston, Kent, BR2 6BY. Contact us at [email protected] or by phone on + 44 (0)333 011 5256
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