Marfan Syndrome News

Afrikaanse weergawe/This site in Afrikaans

PLEASE NOTE THAT, OWING TO THE DEATH OF SAMSO CHAIR AND SUPPORT OFFICER, LORNA HIGGS, THE FUNCTIONS OF SAMSO ARE SUSPENDED, PENDING AN EXTRAORDINARY COMMITTEE MEETING, THE OUTCOMES OF WHICH WILL BE COMMUNICATED TO ALL PAID-UP MEMBERS.

2011 Awareness Campaign: Marfan syndrome features include chest conditions

Marfan syndrome patients with any of the possible chest conditions that can be caused by the disorder, undergo regular monitoring and treatment. This ensures that future damage is prevented, appearance is often improved and there is the best possible quality of life.

The possible problems are:

Long curved ribs result in pigeon chest or hollow chest (pectus deformity) and a bent spine (scoliosis) can push the shoulders forward and cause a hunch-back.
Inside, the heart valves could be faulty (prolapse, murmurs - leaking or regurgitation) and the aorta (large artery) can swell (aneurysm) or even tear (dissection).
The lungs could collapse (pneumothorax) and/or cysts (bullae) and emphysema (breathlessness from enlarged air sacs) could develop. Snoring and sleep apnoea (breathing stops during sleep) are common.

Diagnosis of Marfan Syndrome

Blood or tissue tests for Marfan syndrome can give a false negative result. SAMSO can supply details of the correct diagnostic procedure and has a diagnosis tool on the website for use by doctors.

Connections/Bindings ISSN 1563-4027

(newsletter - free to members)

Vol.12 No.1 - January 2011

SAMSO AGM
2011 Membership
Marfan Syndrome Awareness
2011 Awareness Campaign
Marfan Matters: The Chest in Marfan syndrome
2010 Annual Report

Vol.11 No.6 - November 2010

Grateful thanks to AstraZeneca
Marfan Syndrome Awareness
New Marfan Syndrome Handbook
Marfan Matters: Medical terms used in Marfan syndrome
Beta-blockers and sport

Vol.11 No.5 - September 2010

Grateful thanks to @lantic
SAMSO - Membership & Help
New Marfan syndrome nosology
Headache in Marfan syndrome patients
Marfan Matters: The aortic root in Marfan syndrome
More information

Vol.11 No.4 - July 2010

2010 Membership
SAMSO Future
Beta-blockers and Exercise
Marfan Matters: What causes Marfan syndrome?
More information
Losartan research
Z-score

Vol.11 No.3 - May 2010

SAMSO NEEDS MONEY
Grateful thanks
Marfan Syndrome Course
EXCITING NEWS
- South African Marfan Syndrome Conference
- 8th International Symposium on Marfan Syndrome
More information
Marfan Matters: The Marfan Heart
Thoracic Outlet Obstruction Syndromes

Vol.11 No.2 - March 2010

2010 Membership
Website sponsorship
Marfan syndrome lectures
Marfan Matters: Ligaments and tendons in Marfan Syndrome
Losartan research
More information

Vol.11 No.1 - January 2010

SAMSO 2010 Awareness Campaign - Join the Marfan syndrome family
SAMSO AGM
2010 Membership and subs
Paying SAMSO
Marfan Matters: Snoring and sleep apnoea in Marfan Syndrome
Minutes of AGM and Financial report for 2009

Vol.10 No.6 - November 2009

SAMSO AGM
2009 Membership
More Information
Marfan Matters: The Iris in Marfan Syndrome
Procedures that should not be used in Marfan patients

Vol.10 No.5 - September 2009

Marfan Syndrome Awareness
Medical Specialists
New SAMSO Booklets
More Information
Marfan Matters: Aneurysms in Marfan Syndrome
Warnings

Vol.10 No.4 - July 2009

Paying SAMSO
Medical Specialists
Website Sponsorship
Incorrect Diagnosis
Marfan Matters: Teasing and Bullying in Marfan Syndrome
Marfan Awareness
New SAMSO booklet
Marfan Syndrome Information

Vol.10 No.3 - May 2009

SAMSO Telephone
Price Rises
2009 Membership
Medical Specialists
Marfan Matters: The Spine in Marfan Syndrome
Marfan Syndrome Information

Vol.10 No.2 - March 2009

Grateful thanks to our sponsors
2009 Membership
Contacting and paying SAMSO
Odds and Ends
More Information and Orders
Marfan Matters: Breathlessness in Marfan Syndrome

Vol.10 No.1 - January 2009

2009 Awareness Campaign - Be informed and be in control with Marfan Syndrome
2008 AGM
2009 SAMSO Committee and Trustees
2009 Membership
Sponsorships
Marfan Matters: Be informed and be in control with Marfan Syndrome
SAMSO Meetings
Marfan Syndrome Information

Vol.9 No.6 - November 2008

SAMSO Services
Please Help SAMSO
Marfan Matters: Good and Bad Treatment in Marfan Syndrome
Medical Schemes
More Information

Vol.9 No.5 - September 2008

SAMSO E-mail and Mail
Marfan Syndrome Handbook Price
More Information
SAMSO Website
Donation in memory of:
Fight for your rights
Losartan Research
Marfan Matters: Eye Operations with Marfan Syndrome

Vol.9 No.4 - July 2008

SAMSO Membership
SAMSO Catalogue
Young Members with Dissection
From a SAMSO Member
Marfan Matters: Aortic Aneurysm and Dissection

Vol.9 No.3 - May 2008

NB Paying SAMSO
SAMSO Newsletters
Marfan Matters: Choice of Career with Marfan Syndrome
WARNINGS for Marfan Syndrome patients
Support Group Contact Details
More Information

Vol.9 No.2 - March 2008

SAMSO Meeting - Jan 2008
2008 SAMSO Membership
E-mail from a member
Publicity
Marfan Syndrome Research
More Information
Marfan Matters: Hernias in Marfan Syndrome

Vol.9 No.1 - January 2008

2008 Awareness Campaign: Do they laugh at your long arms and legs?
Marfan Matters: Thrive - in spite of Marfan Syndrome
Positive things about having Marfan Syndrome
Living successfully with the Marfan Syndrome
SAMSO AGM 19 January 2008
2008 SAMSO Committee
Radio Interview
Annual Report 2007

Hospital admission

Admission forms for hospitals usually include a statement that they will not be liable for any injury, illness, harm, loss or damage that you may sustain in hospital, arising from any cause whatsoever, including negligence. This means that you cannot sue them if something happens. Delete the phrase on the form and add: "unless caused by the negligence of the hospital and/or any of its directors, officers or employees". Initial the change and sign the form. You can then sue them if necessary

Herbal Remedies

Please remember that herbal remedies can be dangerous even though they are "natural". The making of the mixtures is not controlled like medicines, so the doses between batches can vary and there are no checks that harmful substances have been removed. The "stress relievers" like St John's Wort, Gingko Bilboa, Kava Kava, Feverfew and Valerian can all react with anaesthetics and a patient who has taken these remedies can remain in a coma for 48 hours after an operation.

St John's Wort can ve very dangerous for the following reasons:

it reacts with anaesthetics
affects liver function and then reduces the effects of drugs such as blood pressure treatments (which Marfan patients use)
should never be used with anticoagulants (used after valve replacement in Marfan patients)
results in cataracts (common in Marfan patients) if the patient is exposed to bright light like South African sunshine