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Marfan Syndrome: Treatment Options for the Affected Person

We have talked about the Marfan syndrome at length in our previous posts. We have already discussed

Today, we will talk about the treatment options available for the affected person.

Marfan Syndrome Treatment

Marfan syndrome treatment involves getting the affected person’s overall health examined by a general practitioner on a regular basis, though the overall treatment might involve consulting a team of specialists because more than one vital organs and/or systems of the body might be affected. The specialists a patient might need to consult usually are:

  •  A cardiologist (heart specialist)
  •  An oculist (eye specialist)
  • An orthopedist (a doctor who specializes in bones and joints)
  • A geneticist (a doctor who studies genetic disorders)
    Marfan syndrome treatment

    Marfan syndrome treatment

The actual plan of action would depend upon the exact requirements of the affected person. There might be patients who might need nothing but a regular medical check-up. There might be others who have to pop pills regularly. The more severely hit ones might even need surgery. The treatment would depend upon a careful examination of the organs affected, and an assessment of the degree of damage that has already been caused.

Available Options

Though medical science has advanced by leaps and bounds in the last few decades, doctors are still clueless regarding the line of treatment for people affected by the Marfan syndrome.

What we do know for sure is that it is, by and large, a genetic disorder. So, the first step towards finding an effective step forward towards curing the affected people would be to identify the errant gene which causes such a massive upheaval inside their bodies. Though scientists and research scholars across the world have been engaged in doing so, lady luck is yet to smile upon them.

Till we are able to identify the killer gene, we will have to be content with treatments which aim at lessening the complications that are likely to arise and, if the patient is lucky, preventing some of them.

 

The Heart:

Among the organs worst hit by the Marfan syndrome, the heart tops the list. The aorta and the valves of the heart grow weaker and the affected person will need to visit a cardiologist at regular intervals to ensure that there is no malfunctioning. Regular electrocardiograms and echocardiograms can help the doctor to assess the extent of damage, if any.

Aortic dilation caused by Marfan syndrome

Aortic dilation caused by Marfan syndrome

Doctors advise most people with a history of cardiac troubles to wear medical alert bracelets, so that no precious time is lost in informing the doctor.

Using beta blockers also helps to reduce the stress on the aorta. Valves which have gone too weak might need surgery for repairing or replacing them. Affected people with weak valves are further advised not to delay surgery unnecessarily, for fear of aortic dissection (or, rupturing of the aorta).

Following surgery, the patients are put on blood thinners for the rest of their lives so as to provide relief to the aorta. As a precautionary measure, they are also asked to take necessary measures which will minimize their chances of contacting endocarditis(an inflammation in the membrane in which the heart cavity is enclosed).

Skeletal System

People affected by Marfan syndrome must get themselves diagnosed by a competent orthopedist regularly, who can inform them in time if the backbone or the sternum has been affected. Regular visits assume all the more significance during adolescence when growth is rapid.

Besides causing disfigurement, such deformities can interfere with the normal functioning of the lungs and the heart.

The backbone affected by Marfan syndrome

The backbone affected by Marfan syndrome

If any deformities are noticed, patients are usually advised to wear orthopedic braces. And if they fail to solve the purpose (or the deformity is too severe to be corrected by braces), surgery might be required.

Nervous System

The dura (or, the membrane which encloses the cerebro-spinal fluid) of the people who test positive for Marfan syndrome is prone to inflammation.

The Central Nervous System affected by Marfan syndrome

The Central Nervous System affected by Marfan syndrome

This condition, called dural ectasia, can usually be quite painful. The inflammation and the related pain can be relieved with the help of medicines.

Eyes

As a part of Marfan syndrome treatment, affected people must get their eyes tested by a qualified oculist regularly.

While simple problems like short-sightedness (myopia) might need only spectacles or lens, deeper maladies like cataract, glaucoma, dislocation of lens, etc. might call for corrective surgery. These are all minor surgeries which require the patient to spend only a few hours at the hospital after the procedure.

Lungs

People affected by Marfan syndrome need to avoid tobacco like plague, because their lungs are highly prone to minor infections.

Sleep related breathing disorders like snoring, sleep apnea, etc should also be discussed with the doctor to be on the safer side.

Pregnancy

Pregnancy can be traumatic for Marfan syndrome patients and should, therefore, be planned only after having discussed the risks and dangers involved (both for the mother and the baby) with a gynecologist.

Pregnancy- Think carefully!

Pregnancy- Think carefully!

Women suffering from aortic enlargement, in particular, fall in high risk category and aortic dissection is not ruled out. Those with normal aortas, however, need not worry on this account.

Aortic regurgitation is common during pregnancy and in case that happens, the gynecologist might have to put the patient on bed rest.

Lifestyle Changes

The most effective Marfan syndrome treatment is introducing some changes in one’s lifestyle- changes that will help him cope with the disorder with a brave face and with the minimum fuss.

Light physical activities like walking, slow jogging, deep breathing, practicing meditation, etc are highly recommended. Besides, recreational sports like golf, swimming, cycling would also benefit the patient immensely.

Care should, however, be taken to avoid contact sports like boxing, etc or strenuous workouts like weightlifting and heavy gymming.

Marfan Syndrome and Diet

Though having a good, healthy and nutritious diet never did anyone any harm, NO correlation was found to exist between eating a person’s eating habits and the damage/ extent of damage caused to him on account of Marfan syndrome.

We have not yet finished talking about this rare disorder. Read on about Famous people with Marfan syndrome in our next post.

There has also been renewed discussion among experts about this disorder ever since the swimming sensation Michael Phelps was said to have been affected by this disorder. To know if he actually suffers from this problem, do read more about the Marfan Syndrome Michael Phelps connection!

 

 

 

 

About Ambika Choudhary Mahajan

Hi, I am Ambika. A hands-on, stay at home mom (by choice) to two cheeky devils.I am a freelance writer and eBook author turned blogger. Connect with me on Facebook, Twitter and Google+ to get regular updates.

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