treatments

Fabry disease affects each individual differently.  The medical management of Fabry disease is diverse and complex and needs to be patient specific. With any multisystemic disorder, effective treatment needs to have a multidisciplinary effort. It is very important that patients be seen at one of the State Fabry treatment centres for a thorough evaluation and assessment in order to develop a complete treatment plan.

Certain lifestyle changes can be helpful to minimise episodes of pain. In preparation for exercise or exposure to heat, drink plenty of water both before and after exercise. Avoiding or minimising other factors that can cause pain such as stress, physical exertion, heat and sun exposure, and extreme temperatures can also be helpful.

For gastrointestinal distress a number of medications (pancreatic enzyme replacements) have been helpful for some, but not all. Smaller and more frequent meals may be helpful in limiting the amount of diarrhoea. Dietary changes can also impact gastrointestinal distress, by reducing the amount of fats.

It is very important to check with your Fabry Treatment Doctor annually to clarify and treat Fabry symptoms whether they are on treatment or not.

08-Dec-2009

Fabrazyme Short Supply for Fabry Patients in 2010

Genzyme Australasia have issued a patient letter for all Australian Fabry patients.

07-Dec-2009

‘World Rare Disease Day’ Feb 28th 2010

FSGA are represented on Australia’s World Rare Disease Day

This section of the website contains published articles from the following sources:

  • Newspapers 
  • Magazines
  • Research Papers
  • Videos
  • Television

There are some great you tube sites suitable for educating young Fabry patients.

Watch the recent Fabry disease episode of House on FOX TV...

Fabry Australia gratefully acknowledges the generous support of the following organisations that are helping to make a difference to people and families affected by Fabry disease.
 
   
               
Fabry Support Group Australia         ABN 70 053 079 595        Reg Charity A0029817E