Treatment FAQ

how marfan syndrome treatment or cure

by Garrick Reilly Published 2 years ago Updated 1 year ago
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While there is no cure for Marfan syndrome, treatment focuses on preventing the various complications of the disease. To accomplish this, you'll need to be checked regularly for signs that the damage caused by the disease is progressing. In the past, people who had Marfan syndrome often died young.May 5, 2022

Medication

  • Regular monitoring of heart
  • Anti-coagulant remedies
  • Intravenous anti-biotic therapy
  • Estrogen and progesterone therapy
  • Surgery
  • Eyeglasses and contact lenses to correct myopia

Procedures

The syndrome affects different people in different ways, but Marfan syndrome does not cause learning disabilities. People with Marfan may: be taller than normal. have a lean, lanky build, as well as long, thin fingers and toes.

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Treatments For Managing Marfan's Syndrome

  • Glasses Or Contact Lenses. Vision problems are one of the most common symptoms of Marfan's syndrome, and glasses or contact lenses can help patients with reading, driving, and other daily ...
  • Scoliosis Treatment. ...
  • Blood Pressure Medication. ...
  • Aortic Repair. ...
  • Avoid Competitive Sports. ...

What are the chances of getting Marfan syndrome?

Marfan syndrome most commonly affects the connective tissue of the heart and blood vessels, eyes, bones, lungs, and spinal cord. However, the condition can affect many parts of the body. The most serious complications are in the heart and aorta and may include: Aortic aneurysm. Marfan syndrome can cause the aorta to weaken and widen.

Can you tell if someone has Marfan syndrome?

What treatment is recommended for Marfan syndrome sufferers?

What does Marfan syndrome do to the body?

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How much is treatment for Marfan syndrome?

The Marfan Foundation points out there are regular doctor appointments, testing, medications, and the cost of any treatments, such as surgeries or therapy. On average, you can expect to pay out $3,000 to $5,000 per year for your treatment of symptoms and ongoing medical care for Marfan syndrome.

How is Marfan syndrome prevented?

Marfan Syndrome Prevention Research has not yet shown that Marfan syndrome is preventable. Some people inherit the condition from a parent, and some people are born with Marfan without inheriting it. It's important to know that if you have Marfan, you can pass it on to your children.

Can a syndrome be cured?

Is there a cure for Down syndrome or can it go away in time? No. Down syndrome is a lifelong condition and right now there isn't a cure. But many health problems associated with the condition are treatable.

Is there research for a cure for Marfan syndrome?

Though there is no cure for Marfan syndrome, treatment with beta blockers and preventive surgery to replace the section of the aorta adjacent to the heart has increased lifespan to near normal.

Can Marfan syndrome be stopped?

While there is no cure for Marfan syndrome, treatment focuses on preventing the various complications of the disease.

Can you live a normal life with Marfan syndrome?

With access to modern medical management, most people with Marfan syndrome have a normal life expectancy. However;some people have died of the complications of Marfan syndrome. There is no cure for Marfan syndrome.

Are syndromes permanent?

As long as a set of symptoms remains mysterious, it may be referred to as a specific syndrome. But if that name is used for a while, it may become the condition's permanent name, even after an underlying cause has been found.

Is Marfan syndrome painful?

It can also interfere with the normal development of the ribs, which can cause the breastbone to either protrude or appear sunken into the chest. Foot pain and low back pain are common with Marfan syndrome.

How serious is Marfan syndrome?

Some complications of Marfan syndrome can be very serious, like an aneurysm (bulge) of the aorta, the main artery that takes blood away from the heart. Some complications of Marfan syndrome can be very serious, like an aneurysm (bulge) of the aorta, the main artery that takes blood away from the heart.

What are future treatments for Marfan syndrome?

Pharmacological therapy is focused more on prevention than on delay of aortic wall pathology in Marfan syndrome. Of the new pharmacological treatment strategies targeting aortic pathology in Marfan syndrome, angiotensin receptor type 1 blockers are promising candidates, with several clinical trials currently ongoing.

Is there gene therapy for Marfan syndrome?

Taking advantage of this technology, we corrected a Marfan syndrome pathogenic mutation, FBN1T7498C. We first tested the feasibility in mutant cells, then successfully achieved genetic correction in heterozygous human embryos. The results showed that the BE3 mediated perfect correction at the efficiency of about 89%.

How Marfan syndrome is diagnosed?

A blood test can help diagnose Marfan syndrome. This genetic test looks for changes in FBN1, the gene that is responsible for most cases of Marfan syndrome. A genetic counselor should review your genetic testing because FBN1 test results are not always obvious.

How does Marfan syndrome work?

Some people may not require any treatment, just regular follow-up appointments with their doctor . Others may need medications or surgery . The approach depends on the structures affected and the severity of the condition.

What is Marfan syndrome?

Marfan syndrome is caused by a defect in the gene that encodes the structure of fibrillin and the elastic fibers, a major component of connective tissu e. This gene is called fibrillin-1 or FBN1. In most cases, Marfan syndrome is inherited.

What is the procedure to repair a dilated aorta?

Surgery involves a replacement of the dilated portion of the aorta with a graft. Valve repair or replacement surgery may be needed when Marfan syndrome causes a leaky aortic or mitral valve (regurgitation) that leads to changes in the left ventricle (left lower chamber of the heart) or heart failure.

What happens to the blood vessels in Marfan syndrome?

Blood vessel changes: With Marfan syndrome, the walls of the blood vessels become weak and dilate (stretch). These blood vessel changes often affect the aorta, the major artery that carries blood from the heart to the rest of the body.

Why do people with Marfan syndrome have a narrow face?

Often, people with Marfan syndrome have a long, narrow face and the roof of the mouth may be higher than normal, causing the teeth to be crowded. Marfan syndrome causes many changes to occur within the body structures, including dental and skeletal (bone) problems.

What test is used to diagnose Marfan syndrome?

A blood test can be used to help diagnose Marfan syndrome. This blood test is highly specialized and looks for changes in FBN1, the gene that is responsible for most cases of Marfan syndrome. Genetic counseling should accompany genetic testing because FBN1 testing is not always straightforward.

Does Marfan syndrome progress with age?

Sometimes Marfan syndrome is so mild, few if any, symptoms occur. In most cases, the disease progresses with age and symptoms of Marfan syndrome become noticeable as changes in connective tissue occur.

What is the treatment for Marfan syndrome?

Treatment focuses on managing the symptoms and reducing the risk of complications. As Marfan syndrome affects several different parts of the body, your treatment programme will involve a number of healthcare professionals. These may include: a geneticist – a specialist in genetic disorders. a genetic counsellor – who provides information, emotional ...

What type of surgery is done for Marfan syndrome?

The most common type of heart surgery carried out on people with Marfan syndrome is an operation to replace a section of an enlarged aorta. This operation must be carried out before the aorta becomes too big. You'll have an echocardiogram every year to monitor the diameter of the aorta.

What is the procedure called when you fuse your spine?

In teenagers and young adults, an operation called spin al fusion may be carried out. This is where the spine is straightened using metal rods that are attached with screws, hooks, and wires. Bone grafts are used to fuse the spine in place. Find out more about scoliosis surgery in children, teenagers and young adults.

What is the treatment for curvature of the spine?

Scoliosis. Treatment for curvature of the spine (scoliosis) will depend on how severely your spine is curved. If your spine is mildly curved, your treatment team will closely monitor it to see whether it gets worse. In some cases, particularly in children who are still growing, a back brace may be recommended.

Does Marfan syndrome cause aortic tear?

They raise your blood pressure and heart rate, which may increase the risk of an aortic tear. These activities also place a strain on your joints. As people with Marfan syndrome often have weak joints, their risk of sustaining a joint injury during these activities may be increased.

Can Marfan syndrome cause heart problems?

Heart problems. Marfan syndrome can cause serious heart problems, which can be fatal. This means it's important that your heart is treated as a priority. You'll need to have regular check-ups with a cardiologist, who'll be able to monitor your heart.

Is Marfan syndrome difficult to deal with?

Being diagnosed with Marfan syndrome can sometimes be difficult to deal with emotionally. If your child has been diagnosed with the syndrome, you may be worried or upset about how it'll affect them. Speak to your GP if you or your child are finding the diagnosis difficult to cope with.

How to treat Marfan syndrome?

The most common treatments for Marfan syndrome include: 1 Medications to lower your blood pressure 2 Medications to make your heart beat slower and help avoid stressing the aorta (the large artery that carries oxygen-rich blood to your body) 3 Treatments for complications that may affect your lungs, spine, or eyes 4 Surgery to repair or replace part of your aorta 5 Long-term monitoring of your heart health

Is Marfan syndrome preventable?

Marfan Syndrome Prevention. Research has not yet shown that Marfan syndrome is preventable. Some people inherit the condition from a parent, and some people are born with Marfan without inheriting it. It’s important to know that if you have Marfan, you can pass it on to your children.

Can Marfan cause an aortic aneurysm?

This can cause serious heart complications such as an aortic aneurysm. Early diagnosis makes a difference in helping those with Marfan have a better quality of life. Treatment can help prevent complications and address them if they occur. If you are diagnosed with Marfan syndrome, work closely with your a doctor at Dignity Health Southern ...

Can you have surgery for Marfan syndrome?

Sometimes, when symptoms progress, your doctor will recommend surgery. In some cases, you will have time to plan for an operation; in other cases, immediate surgery may be needed. Understanding how Marfan syndrome symptoms are treated will help you in your medical journey.

Can you live a full life with Marfan syndrome?

While Marfan syndrome is a condition that cannot be cured, you can live a long, full life with proper treatment and management. Everyone is different, depending on how severe or mild their features are. In general, you can expect some things you need to think about every day, such as medications and limitations on physical activity.

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Diagnosis

Lifestyle and Home Remedies

Coping and Support

Preparing For Your Appointment

Medically reviewed by
Dr. Kabir Sethi
Your provider will work with you to develop a care plan that may include one or more of these treatment options.
There is no cure for marfan syndrome. Treatment focuses on treating the complications associated with it. Regular checkups are required to monitor the disease condition.
Medication

Beta blockers: These make the heart pump at a slower rate.

Losartan

Procedures

Aortic valve replacement: Portion of the damaged or enlarged aorta may be replaced with a synthetic one.

Breastbone correction: Protruded or shrunken breastbone can be corrected through surgery.

Eye surgery: Surgery can be useful when the retina detaches or a cataract is causing the problems.

Specialist to consult

Cardiologist
Specializes in the diagnosis and management heart related disorders.
Ophthalmologist
Specializes in the medical and surgical care of the eyes.
Geneticist
Specializes in the study of heredity and the variation of inherited characteristics.
Orthopedist
Specializes in the prevention and correction of injuries or disorders of the skeletal system and associated muscles, joints, and ligaments.

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