|
There are some 350 different kinds
of Arthrogryposis, which can make the specific type a very
rare occurrence. This in turn, leads to difficulty in diagnosing
the condition and treating it appropriately.
It took the Friedmann
family over a year to nail down the specific type of Arthrogryposis
that Avery has (Arthrogryposis Multiplex Congenita Distal
Type IIE). From our perspective we would strongly recommend
that any parent of a child with suspected Arthrogryposis would
contact Seattle Children’s Hospital for their Arthrogryposis
clinic (Dr. Kit Song); or Dr. Judith Hall at Children’s
Hospital in Vancouver British Columbia. The team of doctors
there, have written the only book available on this rare condition.
Another great source of information is the website: http://www.sonnet.com/awnues.
This is a newsletter/forum for parents and doctors alike to
communicate regarding this condition.
Click Here: For information
regarding the book, A Sure Grip for a Wild Ride; the story
of Avery Friedmann’s struggle for life with the condition
Arthrogryposis.
|
