Bill Klein and Jen Arnold of The Learning Channel’s (TLC's) The Little Couple aren’t your typical couple. They consistently advocate for little people. He is a serial entrepreneur, and she is a board certified neonatologist. Their show has opened dialogue about dwarfism. Bill stands at 4 feet, and has a rare variation of a skeletal dysplasia called Spondyloepiphyseal dysplasia (or SED).
He has had more than 20 surgeries. Jen stands at just 3 foot 2 has a rare type of dwarfism called Spondyloepiphyseal Dysplasia Type Strudwick, has had more than 30 surgeries. She and her husband adopted two children, a boy named Will (from China) and a girl named Zoey (from India), who also have types of dwarfism. Where Bill and Jen distinguish themselves as individuals is in their ability to triumph over hardship, and find enthusiasm with every challenge that comes their way. They do it together as a power couple. They connect with each other to reach new heights in their careers and personal lives. What is the skeletal dysplasia that has challenged the Klein family?
Skeletal dysplasia is a genetic condition for what many people refer to as dwarfism. Skeletal dysplasia can be caused by many different types of genetic mutations, which are passed down from parents to children. While skeletal dysplasia runs in families, a parent can potentially pass the condition to a child even if there is known family history of it. Skeletal dysplasia affects close to one in every 5,000 births. Their arms, legs, trunk, or skull will likely develop with an abnormal shape, size, or both. They may be very short in stature.
Individuals with skeletal dysplasia may also have arms and legs that aren’t in normal proportion with the rest of their body.
Other symptoms can include stubby fingers, duplication of fingers or toes, club feet, missing limbs or ribs, fractured bones, joint pain, scoliosis, developmental delays, or cognitive impairments (formerly known as mental retardation). Skeletal dysplasia includes hundreds of conditions that can affect a person’s bone and cartilage growth. Specific symptoms of skeletal dysplasia vary depending on the disorder that a child has. Other common types of skeletal dysplasia include:
·
Achondrogenesis is a disorder that causes a person to develop short limbs
and a small body.
·
Campomelic
dysplasia is
an often fatal condition that causes dangerous bowing of the long bones in a
person’s legs (and often their arms as well).
·
Hypochondroplasia is
a condition that affects the conversion of cartilage into bone in a person’s
body and results in short arms and legs (as well as hands and feet that are
short and broad).
·
Osteogenesis
imperfecta is
a disorder that results in fragile bones that break easily.
·
Thanatophoric
dysplasia is
a condition that causes a person to develop extremely short limbs, extra folds
of skin on their arms and legs, and underdeveloped lungs.
The
long-term outlook for a person will depend on the type of dysplasia they have.
About half of fetuses with skeletal dysplasia are stillborn (or die shortly
after birth). Some children with the condition survive into childhood. Others
survive into adulthood and live relatively normal lives (in the midst of growth
hormones or various corrective surgeries).
“I hate
that word ‘lucky.’ It cheapens a lot of hard work. Living in Brooklyn in an
apartment without any heat and paying for dinner at the bodega with dimes. I
don’t think I felt myself lucky back then. Doing plays for 50 bucks and trying
to be true to myself as an artist and turning down commercials where they
wanted a leprechaun. Saying I was lucky negates the hard work I put in and
spits on that guy who’s freezing his ass off back in Brooklyn. So I won’t say
I’m lucky. I’m fortunate enough to find or attract very talented people. For
some reason I found them, and they found me.” (Peter Dinklage)[i]
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