Afrikaanse weergawe/This site in Afrikaans

2008 Awareness Campaign: Do they laugh at your long arms and legs?

Then you could have Marfan Syndrome. But you can laugh at them when they need to stand on a chair to reach that shelf!

Even though there are disadvantages and problems for people with Marfan Syndrome, there are also some advantages and there are more good things in life than bad things.

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.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

Vol.7 No.6 October 2006

• SAMSO 2006 AGM
• 2006 Membership
• Support for Groups
• Research Project
• Genetic Counselling
• Marfan Matters: The Foot in Marfan Syndrome

Vol.7 No.5 September 2006

• Another Mystery Deposit
• 2006 Subs
• Foreign Donations
• Diagnosis Tool
• Sport and Exercise
• Diet and Supplements
• Miore Information
• Marfan Matters: Effects of Marfan Syndrome in Families

Vol.7 No.4 July 2006

• SAMSO 2006 Membership
• Awareness Campaign
• SAMSO Website
• More Information
• Marfan Syndrome Research
• Marfan Matters - Dural Ectasia in Marfan Syndrome

Vol.7 No.3 May 2006

• SAMSO Members
• Mystery Deposit
• Postage
• Bookmarks Sponsored
• Exciting New Research
• More Information
• Marfan Memo
• Marfan Matters - Connective Tissue  in Marfan Syndrome

Vol.7 No.2 March 2006

• SAMSO Fax Number
• SAMSO AGM
• 2006 SAMSO Membership
• Tenormin/atenolol - Risks
• More Information
  - AstraZeneca - Tenormin (atenolol) Safety
  - Caffeine and Blood Pressure
  - Diet and Marfan Syndrome
• Marfan Matters - Parenthood with Marfan Syndrome

• Newsletters in 2005
• SAMSO Report for 2005
• SAMSO AGM - 4 March 2006
• More Information
• Marfan Matters - Saving Sight in 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

Back to the top