Sensitive to the Sun?
I’m looking for other
people who have Moebius Syndrome and are sensitive to the sun.
My son, Sean, will be 8 years old on August 8
and has developed hydroa-vacciniforme, a very rare allergy to the sun.
This began last year when he was 6 years old and the doctors believe that
it will go away after puberty (hopefully!!). That will be a very
long 6-7 years.
Sean cannot be in the sun or he gets
big painful blisters on his face, ears, neck, hands and arms (any area
exposed to the sun). Thus, we are faced with the challenge of a little
guy who loves to play ball, swim and ride a bike who can only do so after
the sun goes down.
I’m interested in finding anyone
else with Moebius who also is allergic to the sun.
The doctors at the University Hospital in Columbia,
MO are also interested in speaking to those people. I’ve heard from
one lady who has Moebius and had an allergy to the sun for 8 years.
My phone number is (660) 834-3406.
NOTE - we have a new area code.
Many thanks for your help.
-Vicki
McCarrell, Pilot Grove,Mo
.
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