Let’s talk about growth hormones and heightism

                      

Turner syndrome affects each person in very different ways. We are all unique individuals. But there is one thing over 90% of people with such condition have in common: short stature. Our bodies don’t produce the hormones that humans need to growth normally.

When I was around 4/5 years old, it became evident that I was much shorter than my peers. The TS diagnosis followed a couple of years later. Lucky for me, it was the early 90’s and doctors had developed a synthetic form of growth hormone that could replace the one my body would have produced if I had all my chromosomes. By then, treating kids with TS with daily injections of such hormones was the standard procedure.  Over the years, there have been technological developments, such us novel injection devises, creams to make the shots least painful (I would have killed for that!), etc... But the recommendation of going with this treatment never changed.   

Doctors start prescribing the injections either when reaching the diagnosis, or as soon as the kid stops growing normally. The treatment normally stops around the age of 14, since that’s when it’s usually no longer effective. How can doctors tell the exact point when that happens? I had yearly x-rays of my hands that showed my “Bone age” (maturity of the bones). Once the bone age matches the kid’s chronological age, the body has reached its full growth potential, rendering the synthetic growth hormones useless. It’s time to start HRT to go through puberty instead.

The goal is to reach a height of, at least, 1,52 meters. In most countries, the average height for adult women is close to 1,60 meters, but circa 1,53 is the point when a female adult is considered medically “normal”. Short still. But “normal short”, if you understand what I’m trying to say. (I mean no offense to anybody. I didn’t invent standards of heights, after all).

Mums whose kids were recently diagnosed with TS are sometimes fearful, and even reluctant, to put their kids through this treatment. The side effects are too scary, the kids suffer too much the daily injection, it’s a synthetic substance in our bodies, etc…. It’s natural for a mum to worry. But when they express their concerns in our facebook page, their doubts are met with a resounding DO IT! from the majority of the members, and only a few voices of dissent.

My doctor estimated I would have been around 1, 44 meters (4.6 feet) or maybe less without it. By the end of my treatment, I was 1,53 meters (circa 5 feet). I can’t argue with those results. It doesn’t seem much. But, to me, those extra few inches meant everything. Sadly, two years ago I found out I shrunk a couple of inches, as it can happen when you get older (bad posture, etc…).  

Of course, results vary in each kid. The very fortunate in our facebook group reached 5.3 feet or more with the treatment. Others remained below 5 feet even with it. Other very-very lucky ladies managed to pass 5 feet without treatment. But you can’t know for sure. Basing on my own experience and observations, kids with very tall parents/grandparents get the better results. My parents were average, but my paternal grandma was as short as me, and I have an even shorter great aunt. I didn’t have much to work with to begin with.

It is true that the daily injections can be painful and very annoying. I complained about them constantly. Sometimes, I wanted to quit the hormones. I once asked my doctor what would happen if I quit. Her answer? “You’ll be like a dwarf”. Rough, blunt. But it worked. I never talked seriously about quitting again. At the end of the treatment, I was sorry I couldn’t continue and get taller. I wasn’t entirely satisfied with 5 feet. I would have gladly taken them for another year of two if that mean a few more inches. I would happily take them right now if I could! So, to all the mums: don’t let your kid’s whining and crying discourage you. She’ll thank you when she reaches a relatively normal height.

The possible side effects of GH include: Nerve, muscle, or joint pain; swelling due to fluid in the body's tissues (edema); carpal tunnel syndrome, numbness and tingling of the skin, high cholesterol levels. HGH can also increase the risk of diabetes and contribute to the growth of cancerous tumors. Scary, I know. But any medication you have in your medicine cabinet comes with a LONG list of terrifying side effects that never happen. I personally didn’t get any. Keep in mind that doctors and pharmaceutical are obligated to warn you about every possible side effect, no matter how unlikely, to avoid a law suit. Even if only one person got certain side effect while testing the drug, they must put it on the list.

I wasn’t informed about the side effects at the time. Probably because I was too young and they didn’t want to scare a child. But I’m incredibly happy that my mum decided to take the small risk. Those hormones were the best gift she ever gave me.

It scares me when some mums talk about “natural alternatives” to GH, because they don’t want to inject an artificial substance in their girls’ bodies. There is NO natural alternative to GH. Only the synthetic hormones help our bodies do what they would have done if we had all our chromosomes. Herbs won’t work. Changing the kid’s diet won’t work. You can light candles, use crystal balls and pray. That won’t make your kid taller, unless she’s extremely lucky and TS didn’t affect her much.  

Think about it: if your kid had diabetes, you wouldn’t hesitate to give her insulin, which is artificial too. Any responsible parent gives his/her kids all necessary medication. Growth hormones, to us, are what insulin is to someone with diabetes. It’s not just about height. It has other benefits, such as helping with muscles development. But being taller on its own is more important than you’d think. Some parents argue that “just a few extra inches” are not worth the risk. But reaching a normal height can make a big difference.

First of all, everything we use in our daily lives is made assuming that an adult is 5 feet tall, or taller. Clothes, cars, chairs, adult bicycles, pools, pool tables, etc…  Buying clothes off the rack in the adult section can be a challenge for shorter people. People who are too short need special aids for driving and stools to reach things on higher shelves. Stores put many of their products out of reach for us, and we find ourselves in the humiliating situation of having to ask for assistance.     

Not that short people can’t do anything. Being 5 feet, I’m able to ride a horse if someone helps me mount it. I’m able to ride an adult bike and buy pants of the rack. HOWEVER, when I rode a bicycle, I sometimes fell when trying to stop, since my feet don’t reach the ground if sitting in it. More often than not, I need to shorten the pants I buy.

Some professions are off limits for short people. I always wanted to be a flight attendant, because I love to travel. But the height requirement made it impossible. A flight attendant must be able to help the passengers put their luggage in the compartment, which I can hardly reach. Pilots have to be above 1,60. The police department and the army have height requirements as well. Not to mention the fashion industry and the world of professional sports.

But the worst part of being short is becoming victims of heightism. This is something people with average height don’t get, or don’t even believe it exists. But it’s very real.

In school, the shorter kids are more likely to get bullied.  

And the discrimination doesn’t end there. Various studies show that being taller is linked to a bigger income. Taller people are more likely to get hired or promoted than their shorter peers.

Personal anecdote:  I was a young university student, dreaming about being a reporter. One of my mum’s clients, let’s call her Lucy, owned a small news agency in Buenos Aires, and wanted me to cover for her The 2005 summit of the Americas that would occur in my hometown. (She was unable to attend). All the presidents in the Americas would be there, including George W. Bush (I’m not a fan of him, but the prospect of meeting such an important person was still thrilling). It was probably the biggest event in the history of my city. I was over the moon. On the first day of the summit, I went to get my press credentials wearing my best clothes. The organizers of the event refused to give them to me. I didn’t understand what was going on. Everybody else was getting them. I had them call Lucy to check that I was actually sent there by a real news agency. They called her and confirmed my story. They didn’t care. They still refused to give me the credentials. I went back home broken-hearted and very confused. When I called Lucy to find out what went wrong, she told me that the organizers said that the event was too important and they could only allow “serious”, “real” journalists. I was studying journalism at the university, I was sent there by a news agency. Why didn’t they believe I was serious?

I didn’t understand it at the time. But after reading a lot about heightism, I know now that shorter people are very often overlooked, underestimated or disrespected.  

Some people say “it’s all about attitude”. Of course, your talents and personality can make up for your short stature. The problem is, you don’t always have time to wow people with your brains and strong personality. A potential employer decides in five minutes if you’ll get the job, or not.  

None of this means that we can’t have a normal life and succeed. We certainly can. It’s just harder to get there. We have obstacles taller people don’t even know exist. However, we persist and we are fierce.

Paraphrasing something I heard on TV:

                                                  a small person can cast a very large shadow.