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“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 its wrong. 

They are perfectly made, the way they are.”

Let’s ELEVATE the discussion!  Education and awareness breaks barriers.  So often disabilities are not included in the diversity discussion even though 1 in 4 people live with a disability.  Let’s talk about it.  Education and awareness starts at home, at school and in our communities. 

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’s goal.

 

WHAT ARE LIMB DIFFERENCES?

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 occur for a variety of reasons, and can also be a random occurrence before the baby is born. Hundreds of genetic conditions have a limb difference associated with it as a symptom, some are diagnosed before birth and some are not diagnosed till after they are born. 

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, and there is approx 1 amputation done every 30 seconds.   Check out our info page for more 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 1:250,000 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.