Psychosocial Aspects of Marfan Syndrome

“Let Marfan syndrome be the passenger on your bus, not its driver”
10 Dec 2020

Marfan Trust Newsletter Autumn-Winter 2020

Download our Paper Newsletter Here
10 Dec 2020

Research Report

Dr José Aragon-Martin turned lockdown into ‘heads down’, honing his sequencing skills, analysing his datasets and submitting two manuscript
10 Dec 2020

‘Remote’ Insight from our Chair

The Trust will be working with and for you, as we all get through this winter, the pandemic and look forward to more comfortable times
10 Dec 2020

Dr Child's Casebook: Right of Way

Unknown Priority - SHOULD those with Marfan syndrome receive the vaccine ahead of the general population
9 Dec 2020

Research As Empowerment!

When your past is a blank page you are left feeling powerless. This story highlights the need for more research and awareness of Marfan syndrome
4 Dec 2020

Dr Child's Casebook – Mobilising the Past

A new diagnosis in the family prompts a long reflection on the past.
2 Dec 2020

Dr Child's Casebook – Feeling Unhinged

A patient wants to know how common tibia dislocations are with Marfan syndrome.
25 Nov 2020

How Did The Sonalee Laboratory Come About

Although Sonalee’s Marfan syndrome was not recognised until later on in life, she felt its impact from an early age.
19 Nov 2020

Dr Child's Casebook: Walk Tall

A marked deterioration in his young teenage child’s gait and posture propelled a worried parent to the Trust Helpline
18 Nov 2020

How To Be Happy

Stop kidding yourself that you can control more than you actually can.
13 Nov 2020

Dr Child's Casebook – Off Your Chest

A pressing sense of pressure in their chest recently prompted a member of the public to seek Dr Child’s advice.
11 Nov 2020

Dr Child's Casebook: Molar Influence

A mother seeks Dr Child's advice about their long term dental care
4 Nov 2020

Dr Child's Casebook: Validating Vaccines

A parent concerned about vaccinating children against the flu, contacted Dr Child for advice about the Needle versus Nasal debate
28 Oct 2020

Dr Child's Casebook: A Sense of Disconnect

Sensing something was partially ‘out of place’ at a critical point in her hand, a member of our community called our helpline seeking respite
21 Oct 2020

Dr Child's Casebook: A Leaking Lifeline

A member of the public in the wake of her partner’s recurrent pneumothorax asked Dr Child for help having a possible diagnosis of Marfan syndrome
14 Oct 2020

Hiding in Plain Sight

Our guest blogger, Lucy, describes the challenges of living in near-constant pain, the main source of which is her Marfan syndrome.
8 Oct 2020

Dr Child's Casebook: Measure for Measure

The standard school desk height has remained unchanged over the last 30 years which is an ergonomic nightmare for many
7 Oct 2020

Why Comprehensive Travel Insurance is important!

​The easing of travel restrictions will prompt many to hop on a jet plane in search of sea, sun and sand. Do you have everything you need?
2 Oct 2020

Dr Child's Casebook: Perceiving Pain

The brain must detect and interpret pain signals correctly. How then to diagnose the source of the pain?
30 Sep 2020
The Marfan Trust is registered in England and Wales under charity number 328070 at Guy Scadding Building, Dovehouse Street, London SW3 6LY. Contact us at [email protected] or by phone on + 44 (0)20 7594 1605
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