MESSAGE FROM GROUP MANAGER-READ 1ST!!

[April]

Welcome to AE Circle. As you may have noticed, the activity of this
group is rather low. This is due to a couple of factors: 1. AE is a
rare disorder and a not often searched for topic 2. (and more
importantly) once people find this group, and their or their child's
symptoms resolve after treatment is started, there usually are no
further issues.

I have decided to use this group as a source of information, rather
than as a support group or ongoing question and answer resource. Most
people who come here are new to AE and have questions about the
disorder, dosage, and prognosis. Once they have obtained this
information and assurance, there isn't much need to come back here,
except to re-read the info. This group began several years ago and I
think all of the important questions parents and patients can ask,
have been answered already. So...if you are new to AE, I hope you can
use the files, pages, and discussion posts as sources of information
to help you and/or your child.

A few basic things to remember: AE is genetic. It occurs as an
abnormality on BOTH chromosomes 8, and is therefore an autosomal
recessive disorder (meaning a defective copy of chromosome 8 has to be
inherited from each parent). People with AE do not make the enzyme
needed to absorb zinc. Zinc is vital in the human body and is
involved in hundreds of processes from skin protection to brain
function. There is no cure, only treatment. Without treatment, it is
fatal. Daily high doses of the element Zinc is the only effective
treatment. The dosage of zinc is important and can range from 1 to 3
mg/kg of body weight (remember to convert lbs to kg). The severity of
the disorder varies from person to person. You or your child may need
only 1 mg/kg zinc and another child may need 3mg/kg. It is very
important to have zinc, copper, and alkaline phosphatase levels tested
yearly as they are dependent on each other for proper functioning.

I hope you read all the information in this group as it is a wonderful
collection of knowledge. Thank you for visiting!!
-April