People who are properly diagnosed, adapt their lifestyle, and receive appropriate medical and surgical management can live a normal life span (into the 70s). However, there are no guarantees, and having Marfan syndrome does not mean you might not acquire other conditions that are common in the aging population.
Can a person with Marfan syndrome live a normal life?
Oct 12, 2020 · It is similar worldwide, regardless of geography or ethnicity. Prior to the availability of treatment, life expectancy was severely curtailed: 50% of men died by the age of 40 years, and 50% of women by the age of 48 years. The average age of death was 32. The leading cause of death in Marfan syndrome is heart disease.
Is there a cure for Marfan syndrome?
As early as the 1970s, the life expectancy of people with Marfan syndrome was projected as ‘at least two-thirds’ of a person without the disease. Nowadays, people with Marfan syndrome live until age 70, which is comparable to the average life expectancy of the general population. Both children and adults can live Marfan syndrome as long as they engage in appropriate medical …
Does Marfan syndrome qualify for Social Security disability benefits?
This poor survival was demonstrated in a series of 257 patients with the Marfan syndrome. The average age at death for the 72 deceased patients was 32 …
What happens if you don't treat Marfan syndrome?
How long is the average life span of a person with Marfan syndrome?
What is the most life threatening situation of Marfan syndrome?
Can Marfan cause sudden death?
What is the death rate of Marfan syndrome?
What are 4 symptoms of Marfan syndrome?
- Physical Appearance. ...
- Dental and bone problems. ...
- Eye problems. ...
- Changes in the heart and blood vessels. ...
- Blood vessel changes: With Marfan syndrome, the walls of the blood vessels become weak and dilate (stretch).
How is the family of a person with Marfan syndrome affected?
Can you prevent Marfan syndrome?
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 person with Marfan syndrome be overweight?
Can Marfan syndrome be treated?
What is the quality of life for someone with Marfan syndrome?
Is Marfan syndrome a death sentence?
How long can you live with Marfan syndrome?
Nowadays, people with Marfan syndrome live until age 70, which is comparable to the average life expectancy of the general population. Both children and adults can live Marfan syndrome ...
What is the life expectancy of a person with Marfan syndrome?
Those symptoms typically depend on the person afflicted with the condition, notably due to factors like age. The life expectancy of people with Marfan syndrome originally used to be in the mid-40s, ...
Is Marfan syndrome a cure?
Although Marfan syndrome is a disorder with no known cure, the condition is manageable by many people who now live with the disorder. YouTube. The Marfan Foundation.
Is Marfan syndrome a mild or severe disorder?
Marfan syndrome is a manageable disorder with symptoms that can be mild in some cases and severe in others. Those symptoms typically depend on the person afflicted with the condition, notably due to factors like age. The life expectancy of people with Marfan syndrome originally used to be in the mid-40s, which was determined a number ...
How long does Marfan live?
Nowadays, people with Marfan syndrome live until age 70, which is comparable to the average life expectancy of the general population.
Is Marfan syndrome a good disease?
While people living with Marfan syndrome have a pretty good prognosis, there are ways that they can make living with the disease much easier. Most healthy people living with the disease are able to curb some of the worse side effects by receiving regular medical attention and adjusting their lifestyle to suit their disease.
What is Marfan syndrome?
Marfan syndrome is a condition that originates from a faulty gene that affects the connective tissue of the body.
Is there a cure for Marfan syndrome?
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.
Why is Marfan syndrome so difficult to diagnose?
Marfan syndrome can be challenging for doctors to diagnose because many connective tissue disorders have similar signs and symptoms. Even among members of the same family, the signs and symptoms of Marfan syndrome vary widely — both in their features and in their severity. Certain combinations of symptoms and family history must be present ...
What is the first test for Marfan syndrome?
Heart tests. If your doctor suspects Marfan syndrome, one of the first tests he or she may recommend is an echocardiogram. This test uses sound waves to capture real-time images of your heart in motion. It checks the condition of your heart valves and the size of your aorta.
What is Marfan test?
Genetic testing is often used to confirm the diagnosis of Marfan syndrome. If a Marfan mutation is found, family members can be tested to see if they are also affected. You may want to talk to a genetic counselor before starting a family, to see what your chances are of passing on Marfan syndrome to your future children.
Why do children with Marfan syndrome struggle in school?
For example, children with Marfan syndrome may struggle in school because of vision problems that can be corrected with glasses or contact lenses. For most young people, cosmetic concerns are at least as important as academic ones. Parents can help by anticipating these concerns and offering solutions, such as:
How is an ascending aortic root aneurysm performed?
An ascending aortic root aneurysm procedure may be performed in two ways. In aortic root replacement, your surgeon removes a section of your aorta and your aortic valve, and replaces the section of the aorta with an artificial tube (graft). The aortic valve is replaced with a mechanical or biological valve, shown in the bottom right image. Alternatively, you may have valve-sparing aortic root repair, shown in the top right image, in which your surgeon replaces the enlarged section of the aorta with a graft, and the aortic valve remains in place.
How big is the aorta?
Depending on your signs and symptoms, procedures might include: Aortic repair. If your aorta's diameter reaches about 2 inches (50 millimeters) or if it enlarges rapidly, your doctor may recommend an operation to replace a portion of your aorta with a tube made of synthetic material.
Abstract
The Marfan syndrome is a dominantly inherited disorder of connective tissue with multisystem involvement. The cardiac complications, particularly aortic dilatation, dissection and rupture and involvement of the aortic and mitral valves, lead to a greatly reduced life expectancy.
Author Affiliations
From the Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, and the departments of Medicine and Preventive Medicine, Loma Linda University School of Medicine, Loma Linda, Cal. (address reprint requests to Dr. Murdoch at the Department of Medicine, Loma Linda University, Loma Linda, Cal. 92354).
How rare is Marfan syndrome?
Marfan syndrome is rare, happening in about 1 in 5,000 people . 1 Marfan syndrome is caused by a mutation in a gene called FBN1. The mutation limits the body’s ability to make proteins needed to build connective tissue. 1, One in four people with Marfan syndrome develops the condition for unknown reasons.
What are the complications of Marfan syndrome?
Not everyone with Marfan syndrome has all of the complications. People with Marfan syndrome must be closely followed by their doctor to watch for the following complications: 1 Heart disease, including aortic aneurysms and problems with heart valves 2 Bone deformities such as scoliosis (a curved spine) or a breastbone that is sunken or sticks out 3 Eye conditions that can lead to blurred vision or loss of sight, such as a retinal detachment (where the retina—the part of the eye that senses light in the back of the eye—peels away from its supporting tissue) or dislocation of the lens (where the lens shifts out of place) 4 Teeth that are crooked or crowded together, which might require dental procedures 5 A collapsed lung, which makes breathing difficult
What is 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. 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.
How to treat an aortic aneurysm?
An aortic aneurysm may be treated with medicine or medicine plus surgery. Medicine is used to lower blood pressure to help prevent an aneurysm from rupturing and causing a dissection of the aorta. 2. Severe scoliosis and breastbone problems may require surgery. Eye conditions may also require surgery.
What causes blurred vision?
Eye conditions that can lead to blurred vision or loss of sight, such as a retinal detachment (where the retina—the part of the eye that senses light in the back of the eye—peels away from its supporting tissue) or dislocation of the lens (where the lens shifts out of place)
Does Marfan syndrome get worse over time?
It is true that Marfan syndrome and many of the related disorders are progressive; that is , symptoms get worse over time. This does vary from person to person, though, and how much worse symptoms, such as pain, get – and how quickly they worsen – is unpredictable. Even people without a connective tissue disorder have bone and joint pain as they age. We recommend that you speak with your orthopedist (bone doctor) to discuss pain relief. A pain specialist who is familiar with Marfan syndrome can also be helpful.
Can you get Marfan syndrome at any age?
Even though it’s most common for lens dislocation to happen in younger people with Marfan syndrome, it can happen at any age. And, when it does happen in older people with Marfan syndrome (age 70 or over), the dislocation happens very quickly and it is likely to happen in both eyes. 4.
Is Marfan syndrome progressive?
It is true that Marfan syndrome and many of the related disorders are progressive; that is, symptoms get worse over time. This does vary from person to person, though, and how much worse symptoms, such as pain, get – and how quickly they worsen – is unpredictable.
Can Marfan syndrome cause aorta to enlarge?
Unfortunately, there are no guarantees because Marfan syndrome and related disorders are so unpredictable. The aorta – the large artery that takes blood away from the heart – can enlarge even in older adults with Marfan syndrome.
What is the Marfan Foundation?
The Marfan Foundation works to extend the lives and improve the quality of life for everyone living with Marfan, Loeys-Dietz, VEDS, and other genetic aortic and vascular conditions. Topics: How the Body is Affected. Disqus Comments.
Can you live into the 70s?
People who are properly diagnosed, adapt their lifestyle, and receive appropriate medical and surgical management can live a normal life span (into the 70s). However, there are no guarantees, and having Marfan syndrome does not mean you might not acquire other conditions that are common in the aging population.
What is the hardest thing about Marfan syndrome?
Possibly one of the hardest parts about having Marfan syndrome is accepting that there are limits to what we can do. We have to accept that we are different from “normal” people, who can lift heavy weights or climb up five flights of stairs without cause for concern. We will not be able to play competitive sports, we will not be able to go bungee-jumping. Many of us experience chronic pain or migraines that limit what we are even capable of accomplishing in a day. There’s a whole long list of things you cannot (or should not) do. But you know what? There’s an even longer list of things you can do.
Where is Latasha Doyle?
Life is too short to be limited. Latasha Doyle is a full-time writer living outside of Denver with her husband and six fur-babies. When she’s not writing or playing with her pets, she enjoys crocheting, Netflix marathons, and planning her next trip. She also just happens to have Marfan syndrome.
Diagnosis
Treatment
- 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. With regular monitoring and modern treatment, most people with M…
Lifestyle and Home Remedies
- You may need to avoid competitive sports and certain recreational activities if you're at increased risk of aortic dissection or rupture. Increases in blood pressure, common in activities such as weightlifting, place extra strain on the aorta. Less intense activities — such as brisk walking, bowling, doubles tennis or golf — are generally safer.
Coping and Support
- Living with a genetic disorder can be extremely difficult for both adults and children. Adults may wonder how the disease will affect their careers, their relationships and their sense of themselves. And they may worry about passing the defective gene to their children. But Marfan syndrome can be even harder on young people, especially because the often-inherent self-consciousness of ch…
Preparing For Your Appointment
- Marfan syndrome can affect many different parts of your body, so you may need to see a variety of medical specialists, such as: 1. A cardiologist, a doctor who specializes in heart and blood vessel disorders 2. An ophthalmologist, a doctor who specializes in eye disorders 3. An orthopedist, a doctor who specializes in structural problems of the skeleton 4. A geneticist, a do…