Phocomyelia Reappears

It was a local cabaret night fundraiser for the community theatre, a spirited mixture of volunteers and professionals, performing Broadway numbers.  One of the performers was a young man, about 30, with phocomyelia. You may not have heard of this condition, but fortunately there is always Wikipedia for background.

Those born with this defect have shortened limbs, somewhat like the flippers of a seal.

The term is derived from the ancient word for “seal.” It is also known as “thalidomide syndrome,” after the drug released in the 50’s that caused this syndrome.

Genetic causes do exist, but the incidence in the population is pretty rare.

The young man whom we saw performed sang competently, did not appear to be afflicted with any of the sometimes associated things that could go along with the malformation.

He was about 30 — too young to have had exposure to Thalidomide, released in the late 50s and pulled from the market amid great scandal in the early sixties.

Thalidomide had originally been marketed as a drug for morning sickness.  Best account of its history is from the Brits.  I was surprised to find it was back on the market, but for skin lesions.

Research cited enrolled only male patients.

I can’t find any description of how the drug company who originated the drug found this other application. Accidental observation? Enlightened receptor profiling?

I want to know about human factors.

Back to the young man onstage.

The only treatment for phocomelia is — for arms, or associated malformations — prostheses.

I have cared for people with limb problems and seen their social discomforts.

I remember when my undergraduate university had a president with one phocomyelic limb. A great deal was made of the fact that he had one arm of suit tailored shorter, as his arm was. Most people expected a “normal” suit with a sleeve tucked into his pocket. I thought it a bit curious, then, but had never had personal contact with such folks.

According to the Wikipedia article cited above there are some famous phocomyelic folks.  A 1966 Canadian professional article reviews the state of the art rehabilitation of children born with phocomyelia.

The article starts with describing the necessity of early prosthesis use, and the lengthy support the children and parents would need to deal with their “misfortune.”

The young man who sang used his shortened arms appropriately. Of course, I do not know what the rest of his life is like.

I may be living in an age where, in the middle of a multiplicity of minorities campaigning for acceptance, the physically handicapped may have gained a bit of acceptance.

This pleases me.