Dr Child’s Casebook: Feeling Unhinged

The hinge on which all else rests, knees are a pivotal point of the body, supporting its weight. This weight is displaced in hypermobility disorders when joints are prone to dislocation. Knee caps give way and what once picked us up lets us down. But locating the source of the dislocation can be surprisingly difficult when red herrings are involved, as one Marfan patient discussed with Dr Child.

Q: I want to know how common tibia dislocations are with Marfan syndrome patients? My knees have been dislocating since I was a child. This has always been attributed to floating knee caps. However, I found out today that it’s actually my tibia that is dislocating on both legs/knees. My orthopaedic surgeon said this is rare and is talking about referring me to a specialist so I wanted a bit of advice on what can be done and how common this is with Marfan syndrome. please?

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Marfan Trusts scientist speaks about his role within the laboratory

https://www.justgiving.com/campaign/actnowsavealife

Marfan Trusts scientist speaks about his role within the laboratory and of his life-saving research.

This interview will put things into perspective and answer the most important question of all – Why should I give to Act Now, Save A Life Campaign? Do watch this short interview. https://youtu.be/soYFfNNaKkk

Marfan Trust’s 2020 Silent Auction is Now Live!

Let your imagination roam free with our Silent Auction. 2020 may be keeping us largely confined and indoors but all the better to shop and dream from … your sofa! It’s time to restock your jewellery collection, reboot your leisurewear and plan those trips in 2021. For more information, visit https://www.32auctions.com/MarfanTrust2020

DR CHILDS CASEBOOK:WALK TALL

A marked deterioration in his young teenage child’s gait and posture propelled a worried parent to the Trust Helpline. Marfan syndrome had been strongly suspected for some time, but not definitively diagnosed.The parent wondered which avenue to pursue and what the future holds? https://marfantrust.org/news/dr-childs-casebook-walk-tall

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. Their long-established pectus excavatum was producing increasing discomfort around the sternum area. To relieve the pressure, they were tempted to create a vacuum bell but sought guidance before doing so. Medically savvy, the caller was able to fashion their own pharmaceutical instruments and had recently read the of the bell’s effectiveness in the correction of pectus problems.Q: I’m a medically savvy middle-aged man with marfanoid features including a pectus excavatum that is now troubling me, hindering my breathing. I am also losing my stamina such that a car journey longer than 30 miles is exhausting. Given surgery to correct this is exclusively private, would a vacuum bell work as a non-invasive cheaper option? To Read More, Please Click Here

Wessex Aortic Dissection Education Day 2020

by University Southampton Hospital Aortic Surgical Team

Aortic dissection is a serious condition that if untreated is often fatal, Join us for the day to learn about the condition.

Follow the link below to register for the Online Webinar which will be sent out by the Royal College of Surgeons of Edinburgh :

https://www.rcsed.ac.uk/professional-support-development-resources/learning-resources/webinars/cardiothoracic/wessex-aortic-dissection-education-day

Aortic dissection is a serious condition that if untreated is often fatal. The day will explain the management of a dissection, assessment and investigations for first responders and the surgical management of a dissection within the hospital setting. It will also include talks from relatives and patients. The day will cover treatment and management from the initial involvement of the health care professionals and how the condition is assessed, treated and the impact it has on the patient and their relatives.

Fri, 13 November 2020 08:00 – 17:00 GMT

Help Us Help You by making a donation towards our Act Now, Save A Life Campaign

Being stuck in limbo, not knowing if you have been accurately diagnosed, not knowing how to manage the pain or being uncertain about what the future holds for those affected by Marfan syndrome is a concern that many of our supporters have.

The Sonalee laboratory has been created for precisely this reason – to fund medical research projects that aim to aid the diagnosis and treatment of Marfan syndrome Patients. We hope you will be able to join us in this journey.

Sonalee Laboratory is named in memory of Dr Sonalee Wijetunge. Sonalee died suddenly & tragically during her ward round. The lab was created in her memory, to help reduce early death from Marfan syndrome.

Help Us Help You by making a donation towards our Act Now, Save A Life Campaign. https://marfantrust.org/news/act-now,-save-a-life

Dr Child’s Casebook: Molar Influence

As Marfan syndrome passes down the generations and arrives in the newest family member, it’s all about the known unknown. With the inevitable manifestation in at least two of the three major systems, and the individual variability between those affected, there is much to anticipate. But whether it be eyes or heart or skeleton, there is the probability that teeth may well display marfanoid features, namely overcrowding and a high-arched palate. Mindful of this, a mother with two young children sought advice on their long-term dental care…

https://www.marfantrust.org/…/dr-childs-casebook-molar…

The Marfan Trust are launching an appeal for £5,000

“If Thomas Edison was not curious about light, he wouldn’t have invented the light bulb. If he had given up on research today, we will be busy gathering woods for midnight light.” The Marfan Trust are launching an appeal of £5,000 and hope you are able to support us in continuing our ground-breaking research. Without this additional funding, the Trusts projects risk grinding to a halt. We need your help, Now More Than Ever. Help us to help you by making a donation towards our Act Now, Save A Life Campaign. https://www.marfantrust.org/news/act-now,-save-a-life