Information about Alport Syndrome

Much more has been discovered since Cecil Alport first recognised that a set of seemingly disparate symptoms were in fact all part of the same genetic condition, but there is still a lot of research needed.

It is important that any information is completely up-to-date. For information about AS and kidneys go to http://rarerenal.org/clinician-information/alport-syndrome/

There is a lot of other information to be found at  http://www.alportuk.org/info-alport-syndrome/what-is-alport-syndrome

Anyone from anywhere else in the world who wants to know about the organisation in their own country should contact Alport UK and they will be put in touch with their local organisation.  It is a very wide-spread condition.

The only person who has ever mentioned Alport Syndrome  spontaneously to me was the paediatrician in Paris, France, when my son was born there in 1978 – he had recognised the name on his birth certificate. That made me realise that it was an international problem.

Different people have different ways of coping when faced with the news that they have a life changing medical condition.  This is just one example, I am full of admiration for this young man’s positive attitude:-https://scrapthemask.com/fighting-failure-challenge/

Also, here is a video of some Alport’s patients talking about what it is like living with Alport Syndrome. http://healthtalk.org/peoples-experiences/long-term-conditions/alport-syndrome/topics