Marfan Syndrome News

Afrikaanse weergawe/This site in Afrikaans

2010 Awareness Campaign: Join the Marfan syndrome family

If you, or someone you love, have Marfan syndrome, join SAMSO to stay informed, share your concerns, and join the people who are able to act on information that they can trust.

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.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

Vol.8 No.6 November 2007

SAMSO Meeting and AGM
Sponsorship of the SAMSO Website
More information
Update on the Diagnosis of Marfan Syndrome
DSTV Documentary
Marfan Matters: The Aortic Valve in Marfan Syndrome

Vol.8 No.5 September 2007

SAMSO is for you!
More information
The Patient's Rights
2007 Membership
Marfan Matters: Airways in Marfan Syndrome

Vol.8 No.4 July 2007

2007 Membership
SAMSO Meeting - 14 July 2007
Smile!
Publicity
More information
Marfan Matters: The Hip in Marfan Syndrome

Vol.8 No.3 May 2007

SAMSO Meeting
More Information
International Federation of Marfan Syndrome Organizations
SAMSO Services
Medical Schemes
Marfan Matters: Cataracts in Marfan Syndrome

Vol.8 No.2 March 2007

Wonderful News - Sponsorships
Bad News - Computer Virus
SAMSO Meeting
2007 Membership
SAMSO Website
International Federation of Marfan Syndrome Organizations
More Information
Marfan Matters: Endocarditis and Marfan Syndrome

Vol.8 No.1 January 2007

Awareness Campaign: Sport can be suicide in Marfan Syndrome
SAMSO 2006 AGM
2007 Membership
SAMSO Telephone
Fraud
Newsletter by e-mail
Publicity
Recommended Treatment
Marfan Matters: Sport and Marfan Syndrome

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