A number of medical conditions are known to have additional height as one of the symptoms. The following is by no means a comprehensive list, but does cover the main syndromes.

A high percentage of medical students, when studying a particular illness or disorder will begin to display or think that they display, some of the symptoms. As their studies move on the symptoms clear and make way for a new set. In other words don’t start to imagine the worst.
A syndrome is a set of symptoms, which when observed together, enable a physician to make a diagnosis and to decide on a treatment regime. Just because you may display one of the symptoms associated with a particular condition, it does not necessarily mean that you have the syndrome. For example, myopia (short-sightedness) is sometimes associated with Marfan syndrome, but nearly always in conjunction with a number of other symptoms. You can be myopic, without having Marfan syndrome.

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Simply put: don’t panic! Most of us are tall for a very simple reason and not because of a height-related syndrome. If after reading the article you feel that you would like more information, please contact the appropriate organisation (through the links at the bottom of the page) who will be able to put you in touch with a suitable specialist.

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Medical Matters

The information presented in this section is intended as general information only and should be viewed neither as personal medical advice nor as a substitute for the advice of a suitably qualified physician. Some of the opinions expressed are mine (Phil Heinricy) and written in 2008 and should be treated as exactly what they are: not fact, but merely opinions. I retain the right to exercise my democratic right to be wrong!
A list of organisations which can provide information and support is given in the Appendix at the bottom of this page.
If you are a hypochondriac do not read this chapter!
Medical students frequently develop symptoms of the ailment they are studying I don’t
want you rushing off to the doctor claiming to be suffering from all manner of interesting
disorders.
Fact is that the majority of tall people are so for no sinister reason. Familial tall stature all
of the environmental factors that contribute to tall stature, are largely responsible.
In recent years, with the rapid progress of molecular genetics, more of the causes of
syndromes that are known to be associated with accelerated growth and tall stature have been
identified. However, some of these conditions are such that height is just one small factor in a
wide ranging and complex set of symptoms. The affected individuals and their parents may
face difficulties beyond those caused by tall stature alone.
In others, height is the most obvious feature the syndrome may have little, in any, effect
on the person’s life. In fact, a great many people go through life without ever knowing that
they have some condition or other, as it has no significant impact on that person’s life or well
being.
I shall give only the salient features of some of the better known and more commonly
encountered conditions. At the end of each I shall include any relevant experiences I have had
observations I have made, which I hope will add a little more flesh to the bones of the
information.
I shall avoid using too much medical jargon and terminology. At times I may even seem
to be over simplifying explanations, but I want as many people as possible to be able to easily
grasp the basics. If you are a medical professional who dislikes the simplified explanations
that’s just too bad. Think of them as the back of an envelope sketch, rather than the fully
detailed technical plans.
Genetic research has come on in leaps and bounds since I was involved full-time with the
subject of height I see nothing to be gained by giving you chapter and verse on the technical
stuff.
You think you can handle that stuff? Alright then, try this for size: the molecular genetics
as they apply to Sotos syndrome: Gene Symbol NSD1; Chromosomal locust 5q35; protein
name Histone-lysine N-methyltransferase, H3 lysine-36 and H4 lysine-20 specific.
I did warn you.

Returning to basic English, I shall cover only the more common conditions which may
cause an individual to become significantly taller than expected. That begs the question: what
is significantly taller than expected? Before we get into the detailed stuff, I shall attempt to
clarify that point.

What is Unusually Tall?

I met a man of 6ft 5in who wasn’t unusually tall; I met a man of 5ft 11in who was.
Does that sound like gibberish? At least I have got your attention.
If a 6ft 4in father and a 6ft mother have a 6ft 5in son, no-one should be in the least
surprised. However, if a 5ft 5in father and 5ft mother have a 5ft 11in son, there is good cause
to ask questions.
It is only possible to establish whether a child, or an adult for that matter, is unexpectedly
tall by having some idea of how tall they were expected to be in the first place. One way to do
that is to make reference to the parental height or, more accurately, the mid-parental height.
Mid-parental height is simply the average of the height of both parents. For example, a 6ft
father and 5ft 6in mother give a mid-parental height of 5ft 9in. As a rough guide depending on
which expert’s figures you believe, generally a son will grow to a couple of inches above that
height, a daughter an inch or two below. The margin for error is quite wide. Plus or minus 4
inches for a boy and 2 inches for a girl is considered acceptable.
The main drawback of this method is that it implies no ongoing monitoring of the child’s
height. Without a reference point along the way, it is difficult to know whether growth is
progressing normally or not.
It makes sense always to plot a child’s growth on a growth chart.
Growth charts are available from most doctors’ surgeries. These show the average rates of
growth from childhood to adulthood. Once the mid-parental height has been plotted, it will be
clear where in the overall scheme of things they fall. Say the mid-parental height is on the 75th
percentile, one would expect a child’s height to not divert significantly from that figure
throughout its period of growing. If, for example, the child’s height were instead to register at
around the 95th percentile it could be a sign that further investigation into a possible cause
may be merited. The same applies if it were around the 50th percentile. A significant
divergence in either direction deserves attention.

Another means of estimating a child’s final height is to measure a girl at the age of two
years and three months or a boy at two years and eight months then to double that figure. The
final height is likely to be within a couple of inches either way of that figure. The reason for
the difference in age between the two sexes is that girls tend to reach their final height slightly
sooner than boys.

The medical profession likes to use bone age to determine a probable final height. An xray
of the bones of the hand will give an indication of how far from final fusing the ends of
the long bones are. Fusing takes places at the end of the pubertal growth spurt once completed
the person should not grow any more. Two difficulties arise with bone age x-rays. First, the
physician needs to be very familiar with the procedure. Second, in cases in which one of the
syndromes outlined below is at work bone age x-rays have on occasion proved less than
reliable.
Finally, it is important to remember that height is as much relative as it is an absolute.
Investigation is merited when a child is significantly taller than might reasonably be expected
based on mid-parental height. If both parents are unusually short, then offspring of average
height, although not tall when compared with other children of the same age, should be
viewed as taller than might be expected.

Syndromes

A few words about syndromes in general:
A syndrome is a collection of symptoms which, when observed together, allow a
physician to identify a particular condition.
An individual may display one or more of the symptoms associated with a particular
condition without actually being affected by that condition.
Not all those affected by a syndrome will display all of the symptoms known to be
associated with that syndrome.
Not all those affected will display the same range of symptoms as others who are also
affected.
Not all those who display symptoms will display those symptoms to the same degree as
others who are also affected.
The same clinical symptoms may occur in more than one syndrome. This does not mean
that the individual is suffering from any or all of the syndromes.
Right then, now that we’ve established that being tall doesn’t automatically mean that
someone is ill, we can move on to the more practical stuff.
There is nothing to be gained by withholding information about a syndrome from those
who have been affected. They should be made aware of how the syndrome is likely to affect
their lives, what the implications are how they may need to adjust their lifestyle accordingly.
Treating them with kid gloves will only cause them to worry about what is really wrong can
add stress where it can be easily avoided. Even young children can understand more than
adults generally give them credit for. Explain everything in simple language with simple
analogies ultimately both the parents and the child will benefit.
It is impossible to say with any great degree of accuracy how frequently genetic
inconsistencies occur. Some of the more obvious ones, such as Downs syndrome, are
practically impossible to miss. Many others produce effects so minor that they can easily go
completely unnoticed. Even the estimates of incidence which are given for many syndromes
cannot be taken as gospel, because we simply don’t know how often the syndrome is missed.
Not until every child is genetically tested at birth will the figures have true meaning.
Some syndromes are said to occur only 1 in 1,000,000 live births, while for others the
incidence may be as high as 1 in 500, possibly even more. Add up all the different syndromes
one might be forgiven for thinking that so called genetic mutations are actually verging on
being the norm rather than the exception. Take man’s obsession with identifying and naming
anything that doesn’t conform to some generally perceived norm the picture becomes ever
more muddied.
Take, for example, ADHD syndrome. No doubt some children do have a chemical
imbalance which affects their behaviour, but I cite as an example a friend’s youngest son, who
was diagnosed with the condition. He was disruptive at school, constantly in trouble always
getting into some sort of mischief. Yet when he was alone with adults and given an interesting
task, he would work diligently and creatively for hours on end. He was bright, intelligent,
always willing to learn, interested in wildlife documentaries and history programmes
responded well to acknowledgement of a job well done. This kind of experience makes me
wonder about children with ADHD: do they really have some kind of disorder, or are the
adults around them simply too thick, or too threatened, to recognise highly intelligent children
who are bored out of their skulls?
The more we develop the capacity to identify almost anything that doesn’t conform to a
predetermined norm, the smaller the range of so called ‘normal’ becomes. Perhaps it’s only a
matter of time before those we now consider to be normal will be identified as abnormal,
because there is nothing wrong with them.
Returning to the matter of height related syndromes, many researchers make reference to
overgrowth during the early years, but then state that adult height will be within the normal
range. I suspect that these researchers have treated height as an absolute rather than relative.
Height may ultimately be statistically within the normal range, but is still likely to be greater
than expected based on parental height.
The appearance of similar or even identical clinical symptoms in different syndromes is
referred to as ‘clinical overlap’ makes the whole business of accurate diagnosis difficult. A
physician may diagnose a condition in accordance with whichever one he is already most
familiar with.
It seems that so many syndromes have such a large degree of clinical overlap that, in
practice, the principal difference between them comes down to molecular genetics.
Management and treatment of a condition is more dependent on the nature and severity of
the symptoms than it is on the name; perhaps a case of ‘A rose by any other name…’
 

Marfan syndrome

Marfan syndrome is a disorder of the connective tissue, first described by Dr Bernard
Marfan in 1896. It is genetic in origin. The condition is autosomal dominant, which means
that an affected parent has a 50% chance of passing on the gene to their offspring, although
25% of cases occur as a result of spontaneous mutation. It affects several body systems,
including the eyes both the cardio vascular and skeletal systems.
The gene mutation responsible for Marfan syndrome has been identified. It affects the
production of fibrillin, which is an important constituent of muscles and tendons. In the UK,
genetic testing is rarely carried out. In the USA families with a history of Marfan syndrome
are more likely to be offered genetic testing. Some symptoms associated with Marfan
syndrome are also observed in other conditions which therefore may appear to be similar to,
but are in fact quite different from, Marfan syndrome. Diagnosis by a specialist physician who
is familiar with the condition is imperative.
Great advances in the management of Marfan syndrome have been made. With proper
monitoring and treatment, life expectancy is now considered to be in line with that of the
general population. There is currently no known cure.

Salient Features

Musculo-skeletal

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Tall lean stature, with longer bottom body segment; growth rate is accelerated during the
first five years of life after which it returns to normal; puberty has been observed to occur at
the early end of the age range, in which case the individual may not become as tall as may
have previously been predicted. Arachnodactyly (long thin fingers with prominent joints);
joint hypermobility (the thumb may be pulled back to touch the wrist with relative ease; a
thumb held inside a closed fist is likely to protrude from the fist by as much as the entire first
joint); wingspan usually exceeds height by several centimetres, but can be the same or less.
Unusually narrow and malformed chest (either pigeon chest or funnel chest); scoliosis and/or
kyphosis (curvature of the spine); stretch marks are not uncommon.

Oral

High arched palate; crowded teeth.

Ocular

Dislocation of the lens of the eye (subluxation); detachment of the retina; myopia
(shortsightedness).

Cardiovascular
Dilation of the ascending and sometimes also the descending aorta, possibly leading to
eventual dissection; aortic aneurism. Mitral valve prolapse, possibly with regurgitation
(backwards flow of blood).

Pulmonary
Pneumothorax (collapse of the lung) is not uncommon.

Genetics
Although usually inherited from an affected family member (in 75% of cases), Marfan
syndrome can occur spontaneously (in 25% of cases). Severity can vary substantially between
affected members of the same family.

Treatment and Management
Due to the complexity of Marfan syndrome it is important that it should be monitored by a
physician who is totally familiar with the condition. A regular echocardiogram (NOT
electrocardiogram, although this may also be required in certain situations) is recommended.
This too should ideally be administered by the same person each time to ensure consistency.
Surgical intervention to repair the aorta and the mitral valves may be required at some point.
Ocular problems may also require surgery to replace the lens and to reattach the retina.
Glasses and/or lenses can help to correct some visual defects. Medication, including betablockers,
can help with management of Marfan syndrome. Physiotherapy can help to
strengthen muscles may also be required, possibly in conjunction with bracing, to support the
spine. Lifestyle adjustments are essential; contact sports, long distance running, heavy manual
tasks and the like should be avoided. A good general level of fitness is to be recommended.

Note: A great deal of clinical crossover exists between Marfan syndrome and Beals
syndrome, also known as Congenital Contractural Arachnodactyly. The latter is separate and
distinct from Marfan syndrome, as it is caused by a different gene mutation. Although the two
are clinically similar, the cardio vascular implications appear to be less severe in the case of
Beals syndrome. Without full genetic investigation it is difficult to establish a clear
distinction.
____________________
Personal observations:

Although I have not seen this stated in any of the literature on the subject, I have noticed
that in particular some, but by no means all, young women between the ages of approximately
16-25 with Marfan syndrome may suffer a degree of depression (Please note: I am not aware
of any case in which a diagnosis of either clinical or chronic depression was confirmed.
There is no increased risk of any form of mental illness or disorder with Marfan syndrome).
This appears to lessen with the passing years, maybe due to acceptance on the part of the
individual concerned. Good family support makes a huge difference. Counselling may be of
help. Contact with support groups can also have a positive effect.
General Practitioners may not be familiar with Marfan syndrome, although I believe that
the condition is now included in doctors’ training. Older GPs in particular may therefore have
not encountered the condition. One cannot expect all GPs to be familiar with every last
syndrome or condition, so one must be prepared to ask questions and to insist on referral to a
suitable specialist if symptoms warrant it.
I cite as an example the case of a woman in her forties whom I met at a business lunch. As
she reached across the table for the salt, I noticed her lean and spindly fingers – classic
arachnodactyly. I noted her overall build and asked: “You’re short sighted, aren’t you?”
She looked surprised. “I’m wearing contact lenses,” she said, “How did you know?”
“You get out of breath going up two flights of stairs too, don’t you?”
She confirmed that she did.
“I bet you can pull your thumb back to your wrist,” I said.
“Like this, you mean,” she said, as she did exactly that.
I suggested that she ask her GP for referral to a specialist, who might be able to throw
some light on the subject.
She called me a few weeks later to tell me that her GP had admitted that she had suspected
something wasn’t right but, as she knew nothing of Marfan syndrome, had not known to
whom she should refer her. A visit to a cardiac specialist had confirmed my suspicions she
was due to have mitral valve replacement and aortic repair surgery within weeks rather than
months.
It was only after successful surgery that her specialist told her that our meeting had been
more fortuitous than either of us realised at the time.
I should add that not all people with Marfan syndrome will experience shortness of breath
after moderate physical exertion. However, severe mitral valve prolapse and regurgitation
does affect the flow and thereby oxygenation of the blood, thus shortness of breath can result.
If you suspect something is wrong, it is better to ask questions than to say nothing. In the
words of my own GP: “I would rather see you twenty times about nothing than not see you
the one time that something really is wrong.”

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For more info please visit:

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The Marfan trust

http://marfantrust.org/

Sotos syndrome

Also known as Cerebral Gigantism, Sotos syndrome was first described in 1964. It is
characterised by increased head circumference and overgrowth during the early years of life.
Paradoxically, despite the overgrowth, muscle development is delayed resulting in poor motor
skills delays in speech development. Poor cognitive and social skill may lead to a diagnosis of
autism. A degree of autism may occur, symptoms of Asperger’s syndrome are not uncommon,
but either should be dealt with as part of the larger developmental picture.
The developmental gap appears to close as the child progresses into adulthood. Growth
velocity slows to normal after the initial growth phase, around the age of six. Adults with
Sotos syndrome are likely to be within the normal range of intellect, although height is likely
to be greater than expected based on mid-parental height.
Many genetic conditions are easily identified at or shortly after birth. This is rarely the
case with Sotos syndrome. An accurate diagnosis may only be made after months or even
years of awareness that something is not quite right, vague assurances that all is well, albeit
delayed uncertainty about whether the child will ever develop ‘normally’.
 

Salient Features

Physical Development

Accelerated growth during the first five years of life, after which growth velocity returns
to normal; increased head circumference. Hydrocephalus may be suspected but is rarely
confirmed.

Oral
High arched palate and crowded teeth; teething may begin early. Tendency to drool;
dislike of sucking – breastfeeding may be difficult. Children seem to dislike chewing and will
swallow rather than suck things like a boiled sweet. Poor muscle tone and delayed muscle
development may be the principal reason for these observations. It is also likely to be at least
partially responsible for delayed speech development.

Appearance
Large head; narrow and tall skull; thin hair and high hairline; prominent forehead. Flat
bridged nose; eyes wide set and slanting downward at the outside edges.

Skeletal
Bones mature faster than is usual, bone age in advance of actual age; hands and feet may
appear large when compared to the rest of the body; flat feet or feet that collapse inwardly are
not uncommon; scoliosis may develop. Greenstick fractures, in which the bones splinter
rather than break, have been noted.

General Development

Due to the delay in muscle development motor skills take time to develop and refine;
coordination may remain poor into adulthood – this will often be viewed as simple
‘clumsiness’. Drooling for prolonged periods and mouth breathing may be observed. Children
often show reduced sensitivity to pain and discomfort; bruises and even fractures (usually
greenstick fractures) may be sustained without complaint. Extremes of temperature are often
casually endured (the child’s hands and feet may be blue with cold, but they show no sign of
discomfort). Comprehension of language is often well ahead of speech development, which
may lead to frustration, as a child knows what it wants to communicate but is not able to. This
can initiate temper tantrums and outbursts, which can be disturbing as the child is physically
larger than others of the same age. Intellect may be impaired specialist teaching may be
required – the range varies widely between those with Sotos syndrome with many showing
average intelligence. Emotional development is often delayed. Inappropriate responses to
emotional and social cues can lead to difficulties. Many children with Sotos syndrome grow
to lead normal and independent lives as adults.

Treatment and Management

Physical and occupational therapy to promote muscle development is essential. Speech
therapy will aid effective communication. Alternative strategies to aid effective
communication and mobility will help to build confidence and self-esteem. Appropriate play
in a structured environment can help a child to develop essential skills without distraction.
Completing at first simple and then more complex tasks will build a child’s self confidence
aid developmental progress.
____________________
Personal observations:

I met a young woman of 22 who was eloquent and good humoured about living with
Sotos syndrome. She explained how, as a youngster, even taking her dog for a walk was
fraught with potential danger. A sharp tug on the lead by the dog was all it took to fracture her
wrist. The majority of fractures she sustained as a child were so called greenstick fractures.
Because of her insensitivity to pain she rarely noticed anything was wrong, but her parents
soon realised than any significant bruising made an x-ray examination advisable. Social
Services raised a collective eyebrow at the number of injuries she sustained, but their fears
were allayed by her doctor, who explained the reason. Her parents had been most
encouraging, helping her to exercise and to be as active as possible. She had attended a
mainstream school, completed a college course gained recognised qualifications.
“I’m still a bit clumsy,” she told me, “but it’s only bad when I am really tired.”
When we met, she had just moved into her own flat, had a good job with a large company
had her eye on a certain young man. I have no doubt that his fate was sealed.
At the other extreme, I met a family whose son had many other difficulties in addition to
Sotos syndrome. He would never lead an independent life.
How easy the syndrome is to miss became clear to me courtesy of a letter I received while
I was still running the TPC. I had published an article about Sotos syndrome in the Club’s
magazine about three months prior.
I paraphrase his words, but in essence the man told me this: “We had always known
something was wrong, but couldn’t work out what. The doctor said he was just a slow
developer, but we knew there was more to it. When I saw the article everything became clear.
I showed it to our doctor he referred us to a specialist, who confirmed a diagnosis of Sotos.

We know there is no cure, but now that we know what’s wrong we can deal with it. It’s still
not easy, but at last our son is making good progress, because now we know what to do to
help him. I don’t know how independent he will become, but at least now he has a chance.”
Parents can make a huge difference, simply by being aware applying common sense. I
attended a meeting of parents of children with Sotos, at which a father told me about his
young son: “Once we knew that delayed muscle development was part of it, I figured that it
was probably why our son was so slow to learn to talk properly. He knew what he wanted, but
couldn’t tell us that made him frustrated and angry. I started playing silly games with him,
trying to touch the tip of my nose and then my chin with my tongue got him to copy me. He
loved it we laughed a lot. It helped to strengthen the muscles around his mouth his talking
came on in leaps and bounds.”

Having a child with Sotos syndrome is not the end of the world. With understanding,
patience and the right support, good progress can be made. The results of perseverance can be
immensely satisfying and rewarding for both child and parents.

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For more info on Sotos syndrome:

Contact the Child Growth Foundation.

https://childgrowthfoundation.org/

Klinefelter syndrome

First described in 1942 by Dr Harry Klinefelter, the syndrome that bears his name is
characterised primarily by an additional X chromosome, confirmed by research in the 1950s.
Instead of the usual chromosome formation of 46XY, a male with Klinefelter syndrome will
present with 47XXY. Of all the height related syndromes, it is probably the one most likely to
remain undiagnosed until adulthood; if indeed it is diagnosed at all. This is both good and bad
news. Good, because it is clear that effects of the syndrome are such that they have little
impact on the life of many affected individuals. Bad, because infertility or greatly reduced
fertility is one of its effects may only be detected well into adulthood.
It is a syndrome which affects males only, although some females do have an additional X
chromosome, in which case they are sometimes referred to as Triple X females. Symptoms
are similar to Klinefelter sundrome, but fertility in females appears to be unaffected.
Males with the chromosome formation 47XXY in only some and not all of their cells are
said to display Mosaic Klinefelter. In very rare cases a male may have more than one
additional X chromosome display the formation 48XXXY or, even more rarely, 49XXXXY.
The syndrome seems to occur in about 1 in 1000 live male births. However, it is also
thought that many cases escape diagnosis, so the incidence may be as high as 1 in 500-700.
Salient Features

Physical Development

Accelerated growth during the first five years of life, after which growth velocity returns
to normal; longer bottom body segment. Build is usually lean although some children develop
“puppy fat” and a pear shaped body. Small testicles and occasional failure of the testes to
descend have been noted. Children will tend to begin puberty within the normal age range, but
progress may be slow, with secondary male characteristics slow to develop. Voice may
“bend” rather than break; hair and beard growth is often sparse. Some boys may develop
breast tissue during puberty. This rarely becomes a problem, but in those incidences in which
it does, plastic surgery may be indicated. It is vital that the surgery is carried out by a
proficient surgeon, as residual scarring can have greater detrimental effects than the breast
tissue itself.

General Development

Accelerated growth may result in the body outpacing the muscles so the child may be
uncoordinated and ungainly. Intellectual development is within the normal range for most, but
can vary widely. One group tested produced a range of IQ from slightly below average up to
131. Children may be quite passive and non-assertive, leading them to be viewed as dreamers
at school. They may therefore miss out on a degree of intellectual stimulation which, in turn,
may impact on IQ scores.

Fertility and Sexual Development

By its very nature, Klinefelter syndrome may lead to a slight degree of feminisation.
Males will have either no or very few viable sperm. In a very small number of cases males
with Klinefelter syndrome have fathered children (confirmed by blood testing) but this is the
exception rather than the rule. IVF is an option for some, while for others adoption is the
principal route to a family of their own. Libido tends to be normal although the testes and
testicular volume may be slightly smaller than average, the principal male genitalia is most
likely to be of normal size. Testosterone is produced in the testicles. Reduced testicular size
and volume may impact on the production of the hormone, slowing down completion of
puberty.

Management and Treatment

There is little that can be done for the child, other than to encourage physical fitness and
development by means of exercise and sporting activities intellectual development by means
of a stimulating and supportive learning environment. Some boys with the syndrome show
reduced levels of testosterone production. As a result, puberty is slow to progress a
testosterone supplement may be required to help with completion of sexual maturity. In
addition, this will also aid the ends of the long bones to fuse correctly is therefore likely to
reduce final height. Parents must be made aware that administering testosterone supplements
can lead to increased aggression, which can be cause for concern in an already moody and
possibly belligerent teenager.

Other Implications:

Even academic sources do not agree unreservedly on other conditions which may or may
not be more likely to occur in males with Klinefelter syndrome. Several sources quote a list of
conditions of which those concerned should be aware. Others say that no associated health
implications have been identified. It is probably best to say that general health issues should
be noted and treated as and when they occur.
____________________
Personal observations:

I have known many cases in which Klinefelter syndrome was only diagnosed after a man
presented with fertility problems. Some had, during their childhood, been checked for a height
related syndrome. In most cases Marfan syndrome was initially suspected, but soon
dismissed. Further investigations were rarely carried out, as only Marfan syndrome was
considered major cause for concern.
It is true that Klinefelter syndrome is not life threatening. However, some couples find the
sudden revelation that the man is infertile so traumatic that it causes a major strain on their
relationship, that strain leading to eventual breakdown of the relationship.
That is not to say that Klinefelter is completely without its difficulties. A mother told me
of her son, who had started his growth spurt at the normal time, but was still growing steadily
at the age of 21. His growth velocity was never particularly great, but it was consistent and for
much longer than is the norm. Her doctor had assured her that nothing was wrong, even
accusing her of being a neurotic mother. Once again ‘6ft+’, the magazine of the TPC came to
the fore. She took a copy of the magazine containing an article about Marfan syndrome to her
doctor, sat down in front of him and resolutely refused to budge until he had read it. He
grudgingly admitted that she might have a point referred her son to a growth specialist.
Within weeks he had been diagnosed with Klinefelter syndrome. Exceptionally low levels of
testosterone had prevented him from completing puberty normally. Consequently his long
bones were extremely slow to fuse he had continued to grow for much longer than is usual.
He had also remained the same sullen and moody young man that he had been as a fifteen
year old, in fact a typical teenager, even though he was 21.
The mother was in tears as she told me: “They put him on testosterone supplements six
weeks ago he has changed. He is once again the way I remember him. Thank you for giving
me my son back.”
Had the young man’s height been plotted on a growth chart throughout his childhood, his
unusual growth rate would likely have been noticed much sooner. The difficulties he
eventually faced could have been avoided. Of course, he still has to deal with the implications
of his infertility. I believe that he was fairly philosophical about it, saying that he would deal
with the issue at such time as it became relevant.

​

For more info please contact;

Klinefelter syndrome

www.ksa-uk.co.uk

XYY syndrome

XYY syndrome is characterised by an additional Y chromosome, giving the configuration
47XYY. It was first identified in 1961 is thought to occur in about 1 per 1000 live births.
Because the syndrome does not impact significantly on the physical well-being of the
individual, it is probable that many males with the condition remain undiagnosed the
incidence may therefore be much higher. It has, in the past, been the subject of some highly
questionable research leading to the appellation “the criminal syndrome”. It was thought that
the additional Y chromosome would lead to higher levels of aggression. This was “backed
up” by the discovery that the number of men with XYY syndrome in criminal institutions was
well above the population average. It has been difficult to shake this misconception, despite
considerable research which has proven this particular hypothesis to be untrue.
Salient features

Development

Males will usually be taller than expected, often with a build similar to that of a man with
Klinefelter syndrome. No obvious distinguishing physical features have been noted. Boys
may be physically more active than others of the same age this energy needs to be channelled
productively. Emotional development may be delayed. Slight learning difficulties have been
observed in a number of cases. With good familial and teaching support, these are readily
overcome.
Fertility
Males appear to have no fertility problems. There is no evidence to suggest that the
condition is hereditary.

Acromegaly & Gigantism

Acromegaly and Gigantism, the latter sometimes also referred to as Giantism, are
basically the same condition, distinguished only by the timing of their onset.
The following is an article I originally wrote for publication in 6ft+, the magazine of the
TPC provides a basic explanation of the condition.
____________________
Gigantism:

Growth hormone is secreted by the anterior lobe of the pituitary gland. It
controls the rate of growth of the individual, as well as determining the timing of sexual
maturity. Sometimes, usually due to a micro-tumour, the gland continues to secrete growth
hormone for much longer in greater quantities, than it should. The affected person will
continue to grow upwards, as well as outwards, until secretion is stopped, by medical or
surgical intervention. If unchecked, the person will take on the characteristic appearance of
one suffering from acromegaly.

Acromegaly:

When normal growth is complete the ends of the long bones fuse the person
has reached their final height. If the pituitary starts to produce excess growth hormone, the
person will experience some upwards growth but, due to the fusion of the long bones, many
bones, such as the lower jaw, will grow outwards. This leads to a characteristic appearance of
the lower jaw and lips, thickening of the fingers and feet enlargement of cartilage structures,
such as the nose and adams apple, the latter resulting in a deeper than normal voice.
The condition is not hereditary, i.e. is not passed on from parent to child via the genetic
material, however, some people believe that a set of conditions, or family tendencies, can be
passed on, which may make the child more likely than normal to develop the condition. In
one case, a man reported that several members of his family have had several pituitary related
problems: - diabetes and cryptorchidism (undescended testes), for instance.
A person with the condition will take on a certain appearance, with large hands and feet,
larger facial features, jaw cheekbones of course excessive height, if affected at or before
puberty.
The stature and weight attained due to gigantism can cause a reduction in mobility make
movement awkward and slow. It can be important to maintain some form of exercise
programme, to counteract this.

Salient Features:

General
Coarsening of facial features. The nose and lower jaw may broaden, the lips thicken.
Enlarged hands and feet, thickening of the joints, particularly of the finger may be observed;
carpal tunnel syndrome. The larynx may enlarge causing the voice to become deeper and
more sonorous. Excessive sweating and oily skin; general tiredness.

Cranial
Headaches are not uncommon.

Ocular
Vision disturbance. In some cases the tumour may become large enough to exert pressure
on the optical nerve, affecting vision.

Causes and Diagnosis
Tumours of the pituitary may occur spontaneously, or as the result of head trauma.
Diagnosis is frequently delayed because of the rarity of the condition. Any sudden increase in
height in adulthood must be taken seriously, as it is the most obvious indication that
something is amiss. Unusual growth rate pre-puberty should always be investigated. Early
diagnosis will greatly improve any prognosis.

Treatment and Management
Pharmaceutical regimes can achieve satisfactory results in some cases, while in others
surgical intervention may be required. Advances in technology have allowed surgical
techniques to become far less invasive than they were even twenty years ago. Even so,
specialist physicians will not always be in accord when it comes to deciding upon the most
appropriate course of action. Some will favour a tried and tested procedure, while others may
prefer a newer alternative. A wide range of factors, including the degree to which the
condition has advanced and the general health of the individual, will influence the decision.
Height Restriction and Reduction
Height restriction means limiting growth of an individual to stop them attaining the height
they might have otherwise done. Height reduction means reducing the height an individual
had already attained.
Once again I have raided my personal archives of articles written for 6ft+, the magazine
of the Tall Persons Club GB & Ireland. This one concerns height restriction only. I shall then
deal with height reduction separately. The article has been edited, as the original was written
in the mid 1990s some minor changes have occurred since then. You will gather from the tone
of the article that this is, for me, an emotive subject. I make no apologies for that, but hope
that the factual information answers all of the questions you, the reader, may have about the
subject.
What I find particularly satisfying (in a smug ‘I told you so’ sort of way) is that the
concerns I raised about these procedures back then which were largely waved aside by
medical professionals, are now acknowledged as requiring serious consideration before
embarking on such treatments.

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For more info contact:

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Acromegaly/Gigantism

Pituitary Foundation

https://www.pituitary.org.uk/

Height Restriction

There are three principal methods of restricting the final height a child might achieve all
of them depend on the treatment being started before puberty. Two of these methods are
pharmaceutical, one is mechanical. There are recorded cases in which drug treatments were
begun too late, resulting in the child becoming even taller than it would have done had it been
left untreated.
Artificial Advancement of Puberty
By administering quantities of the appropriate sex hormone to trigger puberty, the pubertal
growth spurt is also triggered ahead of time. Final height is therefore also achieved sooner
should be around two to three inches less than would have been expected without treatment.
Parents often panic when shortly after starting the treatment the child heads north at an
alarming rate, contrary to their expectations. This is perfectly normal, as it is the pubertal
growth spurt, brought on early, exactly as intended. Because the growth spurt also ends earlier
than would have been the case without treatment the child's terminal height is reduced.
The advantage of this method is that it has been in use with generally satisfactory results
for some time its effects are reasonably well understood. The disadvantages are not so well
documented, nor do many doctors tell the parents exactly what the long term implications
might be. Because these treatments were only begun within the past couple of generations, we
are only now seeing those who were treated reaching middle age. We will not have the full
picture until a good number of those people have completed their allotted span on this earth.
First most importantly, high levels of sex hormone in women has been linked with a
higher incidence of cervical and other gynaecological cancers. Second, it has been reported
that in approximately 10% of cases in which high levels of sex hormone have been identified
the women have become infertile. These points must be discussed with the doctor cannot be
ignored when making the decision to begin growth restriction treatment.
One must also consider that the child is effectively being pushed into puberty at a time
when it is unlikely to be psychologically ready to deal with it. A ten year old girl suddenly
blossoming into full womanhood may not be what you want for your daughter, while a
fourteen year old boy resplendent with beard growth and deep voice finds it much easier to
get served in pubs. Along with the sudden physical development comes all the joy and
happiness associated with having a teenager in the house, the mood swings, temper displays
the generally obnoxious behaviour most of us have either been through ourselves, or
remember from our dark and distant past. Imagine facing an angry and aggressive fourteen
year old who has the body and musculature of a young man, but not the maturity to recognise
what is happening and why.
Inhibition of Growth Hormone Production
A number of drugs are now available (though not all of them in the UK) which inhibit the
production of growth hormone in the pituitary gland. Naturally, with lower levels of the
hormone being produced, the final height of the individual is also held in check.
Different drugs are likely to have different side-effects and, as most of the drugs will be
relatively new, some of the possible long term effects may not become fully known and
understood for many years
Leg 'Stapling'
A pin or staple is inserted into the long bones of the leg, in order to encourage the ends to
fuse. The amount of height restriction would appear to be slightly less than with an
appropriately timed drug intervention, but the time at which the treatment may be commenced
is a little less critical.
Few people have reported major side effects with this method, although one has to take
into account that the bones are being deliberately damaged, albeit minor damage, which may
produce effects in the event of severe injury, or later in life as the body ages.
Should We? Shouldn't We?
This is the most difficult question of all. There is no doubt that in some cases treatment is
wholly appropriate, especially when the child is expected to reach an extreme height as a
result of a medical condition. The human body is not designed to be infinitely tall. Muscles,
joints circulation have limits as to what they can reasonably deal with growth restriction
might be necessary rather than just desirable. The following paragraphs are intended to deal
with routine cases of cosmetic and psychological height restriction will not necessarily apply
to those who have a medical condition.
Most growth clinics have reported a drop in the number of cases presenting for restriction
in the last decade, as people are becoming more aware of how the population generally has
increased significantly in height this century. The motivation to restrict a child's height for no
more than cosmetic or psychological reasons is not as strong as it once was.
If you are considering growth restriction for your child, you need to ask yourself why. Is it
because you are fairly tall and had difficulty adjusting to that fact? Did you not have the
support of other family members to help you to deal with being a little out of the ordinary?
Are you now transferring your anxieties on to your child? It is important that you are honest
with yourself in answering these questions, because even if you have your child treated it
won't, for the most part, change their lives to any vast extent. Let me say that again: you aren't
going to make much difference by having your child's growth restricted.
Can that be true? Think about it: if a boy is heading for 6ft 10in the treatment stops him at
around 6ft 6in or so, he will still be tall by most standards, he will still have trouble getting
clothes and footwear to fit, the jokes will still be made, legroom will still be at a premium
wherever he goes, beds will be too short desks too low. The same applies to a girl who might
have been 6ft 2in has been stopped at 5ft 11in. So would the treatment be totally pointless?
Not necessarily; life will be a little easier, but probably not noticeably so.
What happens to the next generation? If your child has had its growth restricted by a few
inches, it will make no difference to its genes, which will still be carrying will pass on, the
gene for the unrestricted height. Do you want your grandchildren to be treated their children,
too? Think also about the attitude you are teaching your child: they are receiving medicine to
stop them being ‘too tall’, therefore to be tall is to be sick, because only sick people take
medicine. Simplistic? Yes, but that's how children think that which they learn in childhood
they will often carry with them to their graves. "Give me the boy until he is seven I will give
you the man," applies here as much as anywhere.
Talking of the next generation, we are all aware of how people are still becoming taller, so
although you might have been tall twenty years ago, by the time your children reach
adulthood they may well no longer be considered as unusually tall. Far better, then, to support
them with the knowledge, experience understanding you have gained over the years by being
tall yourself to help them to build the self-confidence which will make the difference between
them being a tall person or a person who just happens to be tall.
On a grander scale, think about all the other tall people in this world. Most will simply
live with and adjust to their height and, in many cases, learn to love it to capitalise on it. In
advocating treatment you are saying to the retailers, designers, manufacturers standards
setting bodies of this world, ‘don't worry about making things fit the people, we'll make our
children fit your products’. Dumb, or what?
Do We? Don't We?
You've made your decision think it's a good idea to have your child's height restricted.
What now? Off to the doctor for a referral to a growth clinic? First things first: talk to your
child as openly and as impartially as you can about what you propose. You may be surprised
at how even a ten year old child can reach an informed decision, as long as you do give them
all the information, without trying to bias them to your way of thinking. Don't be tempted to
think that they are only children that they won't understand. They can and they will they will
respect you for consulting them.
It cannot be stressed strongly enough how important it is to involve your child in the
decision making process. Many tall people who have had the treatment have commented how
it was imposed upon them and how, given the choice, they would have been happy to have
been left alone not been treated. Some, of course, are happy with the decision made by their
parents, but are already thinking about whether they are going to have their own child's height
restricted; in some cases they had already decided.
Whatever decision you eventually reach between you, make sure that you reach it in good
time, i.e. before puberty starts. It is too late when your offspring is singing baritone in the
church choir, or is off to university; an eighteenth birthday present it ain't!
If you opt for growth restriction for your child, make sure it is for the right reasons, what
is best for them not to exorcise your own troubled childhood ghosts. Talk to other tall people,
parents of tall children. The Tall Persons Club has a section called “Little Big Ones”, which is
a great source of info among parents of tall children, especially for parents who aren't tall
themselves. Talk to other tall children about their feelings then make your decision. Be aware
that the treatment is not reversible. Once you go with it, there is no turning back.
Above all remember that the height restriction you may decide upon is not for your
benefit, but for that of your child. Restricting a child's height can be the right thing to do, but
it has to be for the right reasons.
____________________
I have encountered several parents who made the decision on behalf of their children,
without ever consulting them. From the conversations I had with them it became clear that
they were treating their own insecurities rather than doing what was best for their child in the
long term.
Among those who had undergone the treatment the general feeling seemed to be one of
‘well, it’s done now I don’t know any different’. Most were uncertain whether they would
ever consider having their own children treated when the time came.
It is also true that medical professionals are only human subject to the same failings as we
all are. They may encourage a decision in line with their own feelings or motivations about
height, rather than the best course of action.
On a TV show I took part in an audience member raised the point that if someone is
treated the genes remain unchanged did that mean that the person’s children would also be
deemed to need treatment when the time came? The question was directed at the expert on the
show, a doctor who specialised in height restriction. He said simply: “Well, we have to stay in
business.”
You can imagine the audience reaction for yourself. I think that the remark may have been
a flippant one, not meant to be taken too seriously, however inappropriate it was at the time,
but I wouldn’t put money on it.
Height Reduction
If you are squeamish, you should now go and make a cup of tea or something come back
in a page or two.
Once an adult has achieved their full height, there is only one way to reduce it, lending
credence to the old joke about having your legs shortened.
The femur is shortened by surgically removing a section, typically between two and four
inches, of the bone. This is effectively all but the same as fracturing the leg. Because the cuts
are made under controlled circumstances the break is clean, not ragged as it might be as the
result of an accident, so setting and healing is usually relatively straightforward.
Following healing, extensive physiotherapy is required to get the muscles back into shape.
The person has to learn to walk again, as the body’s centre of gravity will have been shifted
by the operation, thus affecting balance.
In some cases it has been necessary to carry out similar operations on the arms, in order to
maintain the body’s proportions. These may be done one arm at a time, so as to not affect the
person’s ability to function in day to day life any more than is absolutely necessary.
Some Case Histories:
During my time running the TPC I encountered many people who had either had or were
considering height reduction surgery. They in no way represent a comprehensive study I offer
the following only for illustration purposes.
In most cases, the surgery was carried out in the 1960s and 1970s. One had his operation
in the mid 90s.
A woman who had previously been 6ft 6in and was now 6ft 2in told me she was glad to
have had the operation. In her case her height and the difficulties it caused led to severe
depression. Without the surgery she is convinced that she would have committed suicide. At
the time we spoke, in the early 1990s, she was happily married and running a retail business
together with her husband.
A man of 6ft 2in had previously been 6ft 5in. He made it very clear that he now considers
his decision to have the surgery to have been a huge mistake. During our conversations I
discovered that he had not been offered much in the way of counselling and support.
A woman in her sixties had been 6ft 2in was shortened by three inches. The surgery had
been carried out while she was a young woman, in her early twenties. She was now in a
wheelchair, due to numerous problems that had developed in her legs, beginning in her
forties. How much of this was down to the surgery and how much would have occurred
anyway no-one can be sure, although her doctor advised her that without the surgery her
current difficulties would probably have been much less severe. In her own words: “I am now
dependent on a wheelchair to get around. I wish the Club had been around when I was a girl.
If it had been, I don’t think I would have had the operation. Tell anyone from me that it’s just
not worth it in the long run.”
A man of 6ft 4in had previously been 6ft 6in was happy with the results of the surgery. He
was resident on a small island on which most buildings are quite small with low doors and
ceilings. As he was happy living there had no intention of ever leaving the island, he made the
decision to fit into his chosen environment as best he could.
A woman in her late twenties contacted the Club to ask for details of any surgeons willing
to carry out height reduction operations. She firmly believed that all her problems would be
solved if only she were three or four inches shorter. I suggested that she meet some Club
members to share experiences before taking such a drastic step. The woman refused all
suggestions to meet or talk with other tall people; she also refused to undergo any counselling.
When I pointed out that no surgeon would proceed without her having undergone counselling
she told me that she would simply have the surgery done privately.
The last case is an example of someone who, I believe, had chosen to see her height as the
cause of all her ills didn’t want to risk being persuaded otherwise. I doubt that, for her, height
reduction was the answer.
I came across many more people who had undergone surgery, but whether it had been the
right thing to do was rarely clear. For some it certainly was right, while for others the physical
problems that began to develop twenty years later led to regrets. Several suffered with
reduced mobility or, at the least, constant pain and discomfort. One cannot be sure that was
caused solely by the surgery, but one cannot rule out the surgery as a contributory factor. Old
injuries - and that is what height reduction is: both legs broken on purpose – can often lead to
unforeseen difficulties later in life.
Of all the people I spoke with who had undergone height reduction about two thirds
regretted their decision.
The isolation many tall people feel, the sense of being the only person to be so tall, of
being an oddity, has led some to make a decision they would later regret. I have lost count of
the number of times I heard or read the words: “If only the Club had been around when I was
young, my life would have been very different.”
It seems that all too often we resort to surgery not because we should, but because we can
I would apply that to not only height reduction surgery, but to most I do stress most, cosmetic
surgery.

Where height is concerned, surgery is rarely the answer, because however you change the
packaging, the contents will remain the same.

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Appendix:

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Useful Resources

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Most of the organisations listed below are run on a voluntary basis, and therefore change their postal address from time to time. The website is more likely to remain constant. This

The fact that an organisation is listed here should not be taken as an endorsement recommendation or implication that it is a substitute for the advice and services of a suitably qualified specialist physician.

 

Tall Persons Club GB & Ireland

www.TallClub.co.uk

 

 

The Marfan trust

http://marfantrust.org/

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Child Growth Foundation

https://childgrowthfoundation.org/

 

 

Sotos syndrome

Contact the Child Growth Foundation.

https://childgrowthfoundation.org/

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Klinefelter syndrome

www.ksa-uk.co.uk

 

 

Acromegaly/Gigantism

Pituitary Foundation

https://www.pituitary.org.uk/

           

 

For conditions related to unusual height which are not listed here the World Wide Web has a large number of resources.

The quality of the information varies significantly. Check the credentials of the organisation or individual operating the website. Unless you are sure of the website’s credibility, treat information with caution. Consult a suitably qualified and experienced physician or health professional.

The Tall Persons Club GB & Ireland and the Child Growth Foundation are both excellent organisations for information and support, and are good points of first contact. Both should also be able to recommend alternative and specific sources of information and support.

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