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April 7, 2013

Commentary: Growth, Life, and Death

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  Height & Long Life (4.03.08)

Aging Gene (1.06.06)

Living to 100 (11.01.05)

  French Medics Sued Over CJD Deaths – Medical News Today 2/07

Cut Short - An article in Mother Jones (3/00) by David Davis about adults living with CJD threats after hGH injection and how adult hGH therapy might help them.

The debate is growing: Is being short a disability? – 11/06 USA Today

Trial begins into victims of CJD growth hormone – BMJ news 4/96

CJD Litigation by Irwin Mitchell - The history and result as told by the British law firm that won the case in England for the families of the dead and also for those undergoing psychiatric distress from still being at risk due to prior injection.

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The finding that some extremely long-lived people have a gene mutation that makes them short (see "Height & Long Life") struck close to home for ScienCentral CEO Eliene Augenbraun. As a short child, she was part of a study on human growth hormone that, over time, went horribly wrong. Here's her story:

The Long And The Short Of It

When I was a toddler in the early 1960s, my parents were very concerned when I suddenly stopped growing. I seemed healthy enough – my doctor tested everything he knew to test, but he was puzzled. He got me into a study of short stature at the Johns Hopkins Medical School in Baltimore.

I spent days there being poked and prodded. Using what was cutting edge technology at the time, they found me to be: very short; very anxious (wouldn't you be if you were 4 or 5 years old, caged in a hospital far from your family, and stuck with needles every hour all day and all night for 3 days!?); and making normal amounts of growth hormone. They enrolled me in a long-term study of the effects of growth hormone (hGH) injection. I was in the control group – I got nothin'.

The ones in the study who got hGH grew taller, but then, 20 years later, about 2 percent started dying of the human form of Mad Cow Disease – a rare disease called Creutzfeld-Jakob disease (CJD). I was surprised about how little was written about the abandoned patients and the very well meaning physicians and scientists who led these studies. Think of it. They got short people to accept years of painful shots, grow not as much as they were led to believe they would grow, and then... Then what?

David Davis wrote in 1997 that since he was injected with hGH prior to 1977 (the year a safer form was developed), he receives a yearly letter from the NIH updating him on how many people were afflicted with CJD. Though the NIH would not put him into contact with others who were at risk, he found others on his own. (The NIH later encouraged survivors to find each other through a third party.)

Survivors report that they are upset about the possibility of CJD, but more upset by their unmet expectations of a normal life. Being short is a very difficult experience. The wounds of childhood do not necessarily heal. Being deficient of growth hormone as an adult is associated with low energy, obesity, and depression. Then add the anxiety of being at high risk for a horrible death. Many of these folks just want somebody to take responsibility and treat them today for whatever you want to call the condition. My interpretation is that they feel like abandoned guinea pigs.

How did our society allow such a horrible thing to happen? Was it hubris? President Kennedy said we'd get to the moon and so went to the moon. Why not fix poverty, engineer highways, destroy Communism, and fix broken lives with new drugs as well? Maybe greed? A 2008 French lawsuit claims that pituitaries were obtained by bribery, sloppy science, international organ trades. Was this a predictable outcome? What are we doing today that seems logical but will have long term and unintended side effects?

Science can give us choices. Some people will choose one thing, others another. For example, bohemianowl's comment on Digg.com about our story "Height & Long Life," linking short stature with a long life was: "I would rather be tall and live a shorter life."

Today I am 4-foot-10 and a half — half an inch too big to be a dwarf, but I still qualify to ride the kiddy rides at the amusement park. (Good thing – I hate roller coasters.) I loved the 1970s where some people wore tall platform shoes (me) while others wore earth shoes (never me). Besides that, though, there are few things forbidden to me; I work hard to prevent people from treating me like a child or yapping toy poodle.

I have always wondered what would have happened if only I had made it to 5 feet. Still, I have to disagree with bohemianowl — in the end I'll keep my stature, if it means I might live longer life.

       email to a friend by Eliene Augenbraun

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