May
21

Welcome to DysNet! We are live!

Posted on Monday 21st May, 2012

So, what's DysNet all about?


DysNet Welcome to the brand new DysNet site, created especially for people with limb differences and their families, wherever you are in the world.  This site is for YOU to help create a global knowledge-base about limb differences, useful links, documents you've found helpful and so on.  You can also search the database for information that can help you or your family member.  For example - do you know a really great specialist? Do you know a company that makes adaptations or accessories? A great prosthetics firm that's creating innovative solutions? Have you come across a brilliant website or support group that you want to share? You can do all that and more on the DysNet site. 

The more people that join in, the stronger our voice becomes.  We can help reduce the isolation felt by many people who have a limb difference.  To this end, we've also created a moderated, safe community forum over at RareConnect.  It'll be in several languages.  RareConnect is a joint initiative of EURORDIS and NORD, the leading European and North American rare disease organisations. 

You're welcome here, whatever your type of limb difference


There are several reasons that someone may have a limb difference.  It may be congenital, or acquired through illness or a traumatic injury that requires an amputation. 

Those people born with a limb difference may have any one of a number of different conditions, but being born missing a limb or part of one is known as dysmelia.  The limb difference may be an isolated occurrence such as ectrodactyly, or amelia - though these may also part of a wider syndrome or disease. 

A congenital limb difference may also have come from conditions in the womb such as Poland's Syndrome or Amniotic Band Syndrome. 

Limb deficiency can also occur because of external factors such as pre-natal drugs taken by the mother-to-be, for example, thalidomide.  We have also seen environmental disasters such as radiation leaks cause babies to be born missing limbs. 

Some people with a congenital difference have also undergone an amputation of the affected limb to make it easier to wear prosthetics. 

While we have been set up as a site for people born with a dysmelic conditions, we are seeking to be inclusive and if your limb difference is acquired, you are just as welcome to join site and contribute information as well as seek out resources on the site that may help you. 

If you encounter difficulty with the site at all, just get in touch with me via the contact page by selecting 'Community Manager'

Tania Tirraoro

DysNet PR & Community Manager
Tania Tirraoro DysNet PR and Community Manager


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