January
4

A rare disease doesn't stop DJ Dan

Posted on Friday 4th January, 2013


Dan Copeland, a young man from Liverpool, featured last year in one of our videos. 
In this article, Dan, 23, a student and DJ, talks in more depth about his condition and his experience of finding independence. 

Dan CopelandMy name is Daniel Copeland and I have a very rare syndrome called TAR syndrome which is short for Thrombocytopenia with Absent Radius. 

This means I have a low platelet count which causes me to bruise and bleed more frequently and when my blood count is low it causes me to catch viruses more easily than others.  I also have no radius bone in my forearm, the rare thing with this is the fact in most genetic cases if the radius is not present then neither is the thumb.  But with TAR there is a thumb, although the tendons and ligaments are connected to the ulna bone which causes the wrists of the affected to be turned inwards. 

As so little was known about my syndrome as a child, initial diagnoses from knee and hand specialists were not good, telling my parents I would be unable to do basic things from feeding myself to dressing myself.  When I was due to start nursery and primary school, the boards were trying to push my parents into sending me to a special school even though all my problems are physical and not educational.  Read the rest of this article on our RareConnect community.
View Dan's video on RareConnect at this link
If you're affected by limb loss, why not join the RareConnect DysNet community?


Tags: TAR Syndrome rare disease dysmelie dysmelia limb loss RareConnect EURORDIS Article Article

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