News

Category: Articles

Julie's Story

When did you first hear of Marfan syndrome?
2 Feb 2023

#MarfanMondays: Live Long and Prosper

by Camilla Allen
30 Jan 2023

Extra Help?

A new diagnosis can prove costly
27 Jan 2023
Members only

Dr Child's Casebook: On the Pulse

The beat of life
12 Jan 2023
Members only

#MarfanMondays: Jeremy Wins

by Dr Anne Child MD FRCP
10 Jan 2023

Isabella Spreads the Word

Young and Determined!
5 Jan 2023

Introducing our Nurse Specialist

Meet Joanne Jessup
17 Dec 2022

Sonalee Laboratory Research Update

José discusses his latest projects
17 Dec 2022

Growth Management in Marfan Syndrome

by Dr Samuel Sussmes
17 Dec 2022

Gareth's Story

Surveillance is critical to survival ...
15 Dec 2022

Dr Child's Casebook: Waiting Game

What to do while awaiting a diagnosis ...
12 Dec 2022
Members only

Dr Child's Casebook: In a Snap

Often overused the knee is frequently injured
4 Dec 2022
Members only

Dr Child's Casebook: Similar But Different

Letters missing from our genetic jigsaw can cause MFS or something similar
27 Nov 2022
Members only

Dr Child's Casebook: Living with a Label

Is a connective tissue disorder just a label?
18 Nov 2022

The Critique of My Marfan Physique: Part V

by Lucy-Alexandra Atkinson
15 Nov 2022

Lula's New Focus

After complex eye surgery and a horrible scare, Lula has a new clarity of vision!
10 Nov 2022

Jamie's Story

A happy healthy farmer with an undiagnosed condition
7 Nov 2022

Dr Child's Casebook: Declaration Dilemma

Should you divulge your health condition when completing job applications?
4 Nov 2022
Members only

Elsa's Story

in pursuit of fitness with Marfan syndrome
1 Nov 2022

Dr Child's Casebook: Time to Heal?

Does a connective tissue disorder delay the healing process?
28 Oct 2022
Members only

Dr Child's Casebook: Maturing with Marfan

Living better with Marfan syndrome
14 Oct 2022
Members only

Hayley's Story

Improving diagnosis of Marfan syndrome
10 Oct 2022

Dr Child's Casebook: Vices and Virtues

Quit the habit?
5 Oct 2022
Members only

Tim's Story

Running for a Friend
3 Oct 2022

Dr Child's Casebook: Quest for Clarity

Obtaining diagnostic certainty
28 Sep 2022
Members only

Lana's Story: a Tale of Three Sisters

Lana's Long Run
26 Sep 2022

Dr Child's Casebook: Point Break?

Are Marfan folk susceptible to fractures?
14 Sep 2022
Members only

Dr Child's Casebook: A Process of Elimination

How to determine the root cause
8 Sep 2022
Members only

Collaborative Trials Prove Losartan/Irbesartan Effective in Marfan Syndrome

4 Sep 2022

Dr Child's Casebook: Weak at the Knees

Should my child's knock knees be treated surgically?
2 Sep 2022
Members only

Charles' Story

A newly diagnosed Marfan with a bright future
31 Aug 2022

A Muddy Marfan Challenge: Helen's Quest

Helen faces her fears!
26 Aug 2022

Dr Child's Casebook: Inside My Mind?

Does anxiety emanate from inside or outside?
25 Aug 2022
Members only

Liam's Story

Liam loved life and lived fully
22 Aug 2022

Dr Child's Casebook: Heartfelt Measures

18 Aug 2022
Members only

Lindsey's Story

a life less ordinary
16 Aug 2022

Holiday Baggage?

Holiday baggage that is mental as well as physical
11 Aug 2022
Members only

Dr Child's Casebook: Diverted Focus

After seemingly successful eye surgery, a supporter is experiencing visual disturbances ...
4 Aug 2022
Members only

Dr Child's Casebook: Heat in the Heart

A recent heatwave put life on hold but can it also endanger life?
27 Jul 2022
Members only

Dressing Tall

The long and the short of it is ...
25 Jul 2022

Dr Child's Casebook: Parallel Connections

In the absence of an LDS support group, patients turn to us for advice
20 Jul 2022
Members only

Lucy's Story - The Critique of My Marfan Physique Part IV

by Lucy-Alexandra Atkinson
18 Jul 2022

Dr Child's Casebook: The Bottom Line

Is surgery appropriate?
14 Jul 2022
Members only

Amiyah's Story

A little Marf and her Mum
11 Jul 2022

Dr Child's Casebook: Spinal Conundrum

When to medically intervene ?
7 Jul 2022
Members only

Books for Children

by Sophia Kazmi
4 Jul 2022

Dr Child's Casebook: With Every Breath

World Pneumothorax Day
30 Jun 2022

Climbing for a Cause

Intrepid 13-year-old George faces his biggest fears for the Marfan Trust
27 Jun 2022

Dr Child's Casebook: One a Day?

The science of supplements
22 Jun 2022
Members only

Stamp for Marfan!

Postage makes pounds for the Marfan Trust
20 Jun 2022

Dr Child's Casebook: Cause for Concern?

Is a small but sudden leap in one's aortic reading necessarily alarming?
15 Jun 2022
Members only

James Griffin

Never was there another who lived so fully
13 Jun 2022

Dr Child's Casebook: Is There Something I Should Know?

Do I have a connective tissue disorder and if so, should I know?
9 Jun 2022
Members only

Dr Child's Casebook: What to Say?

How to approach the subject of Marfan syndrome?
1 Jun 2022
Members only

SOS from Ukraine: Part 1

Seeking sanctuary in the UK, a Ukranian with Marfan syndrome needs our help
27 Apr 2022

Alan's Story

My Life with Marfan Syndrome
28 Mar 2022

Do They Or Don't They?

Famous, and Famously Fictional, Folk with Marfan Syndrome ...or something similar
15 Mar 2022

From the British Museum

An Unexpected Celebration of Marfan Syndrome
13 Dec 2021

The Critique of My Marfan Physique Part III

by Lucy-Alexandra Atkinson
21 Oct 2021

Summer in the Sonalee Laboratory

New Research at the Marfan Trust
13 Aug 2021

On the Frontline

A Marfan medical student offers us a rare glimpse into life on the hospital ward during COVID's reign
23 Jul 2021
Members only

The Critique of My Marfan Physique Part II

by Lucy-Alexandra Atkinson
1 Jul 2021

The Critique of My Marfan Physique

By Lucy-Alexandra Atkinson
27 May 2021

Chris's Story

​When an overheard conversation saves a life
13 May 2021

Stuart's Story - A Unique Journey

Walking in the shadow of our namesake!
1 Apr 2021

Myths and Misinformation Debunked! The Vaccine, Explained

A recipient of the vaccine herself, Dr Anne Child dispels disinformation and sets things straight
18 Feb 2021
Members only

Christopher’s Story: Marfan Awareness Month

This is the story of Christopher whose Marfan syndrome was captured at an early age, allowing him to claim his condition
16 Feb 2021

In Good Company

Marfan syndrome is writ large on the cinema screen, and lurks behind the sensational sounds of Broadway - here are three notable names
11 Feb 2021

Awareness Saves Lives: Wayne & Lewis' Story

This is the story of Wayne and Lewis - of a life lost and a life shaped by Marfan syndrome
9 Feb 2021

Lost in Translation - Marfan Encyclopaedia

This article elucidates, delineates and celebrates marfanoid medicalise in a comprehensive list!
5 Feb 2021

Bereavement Advice

This article gathers indispensable pieces of advice forming a one-stop Guide to Grief
21 Jan 2021

Psychosocial Aspects of Marfan Syndrome

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

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

Fundraising Update Winter 2020

As with all charities, the Marfan Trust had to transform, innovate and adapt to the changing times.
10 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

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

How To Be Happy

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

Latest Statement on Covid-19 from The Marfan Trust

With the newly introduced Rule of Six, we assess what you can – and can’t! – do when meeting friends and family
11 Sep 2020

Diagnosis of Marfan Syndrome

​In her two-part Casebook Appearances Can Be Deceptive Dr Child discussed the misleading mimics and disguised carriers of Marfan syndrome
10 Sep 2020
Members only

Straight up!

A momentous innovation in the surgical treatment of scoliosis was recently reported to our Facebook page
3 Sep 2020
Members only

Dexamethasone – A Panacea?

From humble steroid to heralded superhero, Dexamethasone is a basic anti-inflammatory recently catapulted into the headlines
23 Jul 2020
Members only

Pause For Thought - The Power of Mindfulness

Pressing pause on modern life has offered the world significant pause for thought
3 Jul 2020

Gastrointestinal Disturbances in Marfan syndrome

​A significant proportion of patients with Marfan syndrome (MFS) have gastrointestinal disturbances constituting irritable bowel syndrome (IBS)
11 Jun 2020
Members only

Marfan Trust Collaborates with Cambridge University

Frozen skin cell samples donated in the past by Marfan syndrome patients are being wakened up to test new medications in the laboratory
4 Jun 2020

New Gene Discovered for Non-Marfan Scoliosis (Spinal Curvature)

​The discovery of Genetic Mutation in TTLL11 Gene will allow us to screen children of a scoliosis parent
6 May 2020
Members only

How to Access the Drug Irbesartan

Following the successful completion of the AIMS Trial the drug Irbesartan has been shown to be effective in delaying aortic root widening
6 May 2020
Members only

AIMS Results Show Irbesartan is Effective in Marfan Syndrome

Results show that the drug Irbesartan reduces aortic dilatation in children and young adults with Marfan syndrome
5 May 2020
Members only

COVID-19 Advice for Pregnant Women

​This advice is based on a combination of available evidence, good practice, and expert advice
30 Apr 2020
Members only

On the Home Front at Marfan HQ

On the Home Front at Marfan HQ
30 Mar 2020

More Choice for Marfans patients with New "External" Wrap Technique

'PEARS' is a new external ‘wrap’ technique for treatment of ascending aortic aneurysm, is gaining support worldwide
27 Nov 2019
Members only

Advice for Teenagers with Marfan Syndrome

We recently received the following plea for support from the anxious parent of an affected teenager
20 Nov 2019
Members only

AIMS Study Paper Accepted for Publication

The Marfan Trust has an important paper accepted for publication based on its groundbreaking study
20 Nov 2019
Members only

What is Marfan Syndrome?

25% of Marfan syndrome patients are the first one affected in the family.
30 Sep 2019
Members only

Fatigue and Depression in Marfan Syndrome

A 44 year old man with Marfan syndrome rang for advice as he was falling asleep at his desk
7 May 2019
Members only

Supporter Achievements - Dan Hyde

​Congratulations to Dan Hyde on the great achievement of being appointed as Director of Music at King’s College, Cambridge.
1 May 2019

Incidence of Pneumothorax in Marfan Syndrome

What is the correct incidence of pneumothorax (free air in the chest cavity that causes the lungs to collapse) in Marfan syndrome?
9 Oct 2018
Members only

Management of Pain in Marfan Syndrome

8 Oct 2018
Members only

AIMS Trial - Results Positive

AIMS trial results show that Irbesartan is well tolerated with very few side effects
10 Sep 2018
Members only

The Acceptability of Prenatal Diagnosis & Pre-Implantation

Latest research can help decisions when starting a family
6 Sep 2017
Members only

Update and Diagnoses

Latest diagnostic approaches
30 May 2017
Members only

Q&A: Joint and Muscle Problems in Marfan Syndrome

Dr Anne Child and Professor Rodney Grahame explain all
29 May 2017
Members only
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
Log in | Powered by White Fuse