Every body is made differently, but every body is perfectly made.  Seeing the person, with all their unique differences and celebrating what makes them who they are is Uniquely Me Foundations goal.

“Perfectly made, the way you are.”

Let’s ELEVATE the discussion!  Education and awareness breaks barriers.  Education and awareness lead to understanding and inclusion.  It helps remove the stigma and the fear of the unknown.  Let’s talk about it and celebrate it.  Limb differences are just differences, and that is ok.  Education and awareness start at home, at school and in our communities.

“A child or adult with a limb difference is not sad or in need of pity.  Simply because their body works or looks differently than others does not mean it’s wrong.

 

WHAT IS A LIMB DIFFERENCE?

Limb difference is simply a difference of a limb.  There are two general types; congenital (meaning your born with it) or acquired meaning by illness or accident). Limb differences can occur for a variety of reasons and its nothing you or your parents did or didn’t do.  Hundreds of genetic conditions have a limb difference associated with it as a symptom, sometimes they are diagnosed before birth, and some are not diagnosed till after a baby is born.  Limb differences can also be a random occurrence as the baby is developing.

Sometimes an accident or an illness requires an amputation.  Did you know that there is roughly 1 amputation done every 30 seconds in the world?  Limb difference families are not alone. There is strength and beauty in our communities.

Different types of differences include- Longitudinal, Transverse Limb Differences, Symbrachydactyly, Polydactyly, Oligodactyly, Ectrodactyly, and Syndactyly. Upper limb differences occur in 4 out of every 10,000 births.  Check out our info page for more to learn about rare disorders.

There are over 30 million people worldwide living with a limb difference/loss.  There are 30 million different stories, different experiences and unique perspectives. Through educations we can raise awareness and support our communities.

What is TAR Syndrome?

Thrombocytopenia Absent Radius (TAR Syndrome) is a rare genetic condition affecting roughly 1:200,000 births.  It is characterized by very low levels of platelets (which help your blood clot) and missing the radial bone, in each forearm.  There are many different variations of how people can be affected by TAR Syndrome.

 

Missing additional arm bones and different lower limb differences, such as missing knee joints are common.  People can also have heart and kidney problems, or bowed legs, as well as dairy allergies.

 

The greatest mortality risk for a person with TAR is during the first two years of life.  Because platelets and sometimes red blood cell levels are unpredictable and low, the risk of hemorrhage from an injury is much higher.  Frequent transfusions are common to keep platelets in a safe range, particularly while kids are young.  Typically, platelet numbers improve and stabilize beginning around age two which reduces the need for frequent transfusions.

Rare disorders are financially challenging.  Because it is rare, there is not enough research devoted to the syndrome, which means limited knowledge and resources

Families often travel far distances to see specialists, to receive therapies and devices.  Often treatments take you away from home for weeks or months at a time.

The most important thing to know is that these kids and adults are strong, they are determined, and they are unstoppable.  They are artists, teachers, writers, nurses, professionals, dancers, and athletes.  Challenges are overcome every day.  These families are strong, creative, adaptive and unique!

UMF’s mission is to elevate the discussion about inclusion, disability and limb differences.  Differences are beautiful and those things that make us unique, make us who we are.