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Afrikaanse
weergawe/This site in Afrikaans
Frequently Asked Questions
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Does Marfan Syndrome only affect
males?/Does Marfan Syndrome only affect
females? |
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No. The disorder affects males and females of every race.
Even in one family, a male can pass it on to both sons and
daughters and a female can pass it on to both sons and
daughters. |
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Does Marfan Syndrome skip
generations? |
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No. Marfan Syndrome is passed on as an autosomal dominant
disorder and only affected people can pass it on to their
children. There are no unaffected carriers, but there is
considerable variation in severity and symptoms and someone
who appears to be only slightly affected can still pass it on
to children, who could be seriously affected. |
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How many children will be affected if
one parent has the disorder? |
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Every child of a sufferer has a 50% chance of inheriting
the disorder. The results of previous births have no effect on
later ones, so all the children, some of the children, or none
of the children, could be affected.
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Will I die young? |
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Marfan Syndrome can be responsible for death (usually as a
result of burst aneurysm or dissection of the aorta) at any
age from birth to the eighties, or older. The average life
expectancy of Marfan Syndrome patients used to be in the
forties, but now that the dangerous symptoms can be monitored
and treated (with drugs to keep blood pressure low, or an
operation), sufferers have a good chance of reaching their
seventies. It is, of course, possible to die young as a result
of accident, murder, cancer, artheroscelosis (blocked
arteries), AIDS, etc. People with Marfan Syndrome have the
same chance as everyone else of dying of those. |
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Will I need a heart
operation? |
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Once Marfan Syndrome has been diagnosed, the heart valves
and aorta can be monitored by echocardiogram and drugs can
slow, or even halt, the enlargement of the aorta. If the aorta
is enlarged, or enlarges very fast, then an operation is
recommended before the situation becomes serious. This
non-emergency operation is 98.5% successful and results in
many years of good-quality life. |
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What can I do for my Marfan Syndrome
asthma, allergies, etc.? |
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People with Marfan Syndrome have the same chance as
everyone else of having allergies - asthma, hayfever, rashes,
etc. They are not related to the disorder and need the same
treatment as in everyone else. (Asthma may aggravate the
Marfan Syndrome-related
emphysema and pneumothorax.) |
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Why do I get bronchitis or pneumonia
so often? |
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Although Marfan Syndrome can affect the lungs
(pneumothorax, emphysema, etc.), it does not cause bronchitis
or pneumonia.
Marfan Syndrome patients have the same chance
as everyone else of having their lungs affected by germs and
viruses. |
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Does Marfan Syndrome affect the
brain? |
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Any mental retardation that exists in a Marfan Syndrome
patient will be a result of some other factor. Marfan Syndrome
patients frequently have an above average IQ and many have
higher degrees. However, Marfan Syndrome patients can suffer
from hyperactivity, attention deficit disorder or migraine
headaches. |
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Is it OK to play basketball, do
athletics, etc.? |
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No. Even though Marfan Syndrome patients have an athletic
build (tall and thin), only gentle, non-isometric exercise and
non-contact sport is recommended. |
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Can I use weights to build up some
muscle? |
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No. Weight-lifting is an isometric exercise and strains
the heart and weak aorta. |
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Will I go blind? |
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Once Marfan Syndrome has been diagnosed, regular checks of
the eyes by an ophthalmologist (eye specialist) are
recommended to check for the Marfan Syndrome-related ectopia
lentis (detached lenses), cataracts and glaucoma. All of these
can be treated before there is too much damage and total
blindness is unlikely to occur. |
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Can I use contact lenses instead of my
very thick spectacles? |
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Many Marfan Syndrome patients have an abnormally flat
cornea. Not only can this lead to open angle glaucoma
(increased pressure in the eye), but the cornea is often too
flat for the curved contact lenses. |
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Can I have laser treatment for my
short-sightedness? |
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Although lasers are successfully used in glaucoma
treatment, the laser treatment (PRK or LASIK) to correct
refractive errors, e.g. myopia, is not recommended in Marfan
Syndrome. The long-term effects and efficiency of the
treatments have not yet been determined in healthy eyes and
also any eye operations in Marfan Syndrome patients can lead
to partial retinal detachment which results in partial
blindness. |
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Why is my Marfan Syndrome child so
lazy and always tired? |
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Marfan Syndrome frequently affects the mitral valve in the
heart and can also affect the aortic valve. Either, or both,
of these results in chronic tiredness. Plenty of sleep is
needed. |
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Why does my Marfan Syndrome teenager
complain of being giddy? |
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A faulty mitral valve in the heart can lead to tachycardia (fast
or irregular heartbeats - palpitations). This can cause a feeling of
light-headedness as well as the strange pulse-rate. It is usually
triggered by stress - physical, mental or psychological.
Many
Marfan Syndrome teenagers also seem to "outgrow" their strength
during their excessive growth spurt. The light-headedness is due to
a drop in blood-sugar levels and is treated with many
high-carbohydrate meals (porridge, bread, sugar, glucose, pasta,
rice, potatoes, etc.) throughout the day. |
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Can we stop my child's excessive
growth? |
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Hormones can restrict excessive growth, but they can have
serious side-effects. They cause early maturity and would affect the
teen's self-image, which could already be poor as a result of
different stature, inability to play sports, etc. Treatment could
also result in imbalances in hormone levels later in life. It should
only be undertaken after very careful consideration.
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Can a pectus deformity be
corrected? |
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Pectus (ribcage) deformity is caused by the very long ribs
either pushing the sternum (breastbone) outwards to form a pigeon
chest, or inwards to form a hollow funnel chest. In the latter case
the sternum can push against the heart and lungs and must be
corrected by an operation. If there is no pressure on the organs,
the pectus deformity is only corrected for cosmetic reasons. As this
is a very painful operation, it should only be undertaken after very
careful consideration. |
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Why do I have so much arthritis
pain? |
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Marfan Syndrome can affect the ligaments in the joints and that
is probably why many patients complain of joint pain or "arthritis"
from an early age (teens). Many Marfan Syndrome patients do exhibit
osteoarthritis, but it is not known if it is more common in the
disorder. It may just be identified during x-rays for other Marfan
Syndrome-related symptoms. |
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Is it OK to smoke? |
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No. Marfan Syndrome can cause emphysema in the lungs even
without smoking. Smoking can thus result in very early damage to the
lungs. Also, smokers are eight times more likely than other Marfan
Syndrome patients to need second (or even more) operations to repair
aneurysms and dissections of the aorta. |
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