marfan syndrome life expectancy reddit

The figure of 30 years is somewhat old and was represents untreated cases. Its easy to go undiagnosed.

Survival Causes Of Death And Cardiovascular Events In Patients With Marfan Syndrome Vanem 2018 Molecular Genetics Amp Genomic Medicine Wiley Online Library

Your case may be mild and youve been checked by a doctor so maybe it is unlikely to shorten your life.

. Long thin hands and feet. The survival of untreated patients with Marfan syndrome is reduced by about one third with death occurring at an average age of 30-40 years. One in 10 patients may have a high risk of death with this syndrome due to heart problems.

1 Marfan syndrome is caused by a mutation in a gene called FBN1. My grandpa lived to be 62. Am J Med Genet.

Despite the high risk for Marfan related cardiovascular problems the average life expectancy of those with Marfan syndrome is nearly 70 years. There is no cure for Marfan syndrome but life expectancy has increased significantly over the last few decades when and is now similar to that of the average person. Marfan syndrome is rare happening in about 1 in 5000 people.

I am 38 right now and happy to be here. This is a pretty good site to answer some common non-technical questions you may have I directed it to the life expectancy question. Aortic Dissection and Marfan Syndrome Family Life.

Nowadays people with Marfan syndrome live until age 70 which is comparable to the average life expectancy of the general population. A detailed family history medical history. The average age of death was 32.

Advances in the management of the cardiovascular manifestations of this syndrome have led to a significant decrease in the death rate that is. With proper treatment they can live up to half the time a normal person would or longer. 708752 The median cumulative probability of aortic event-free survival when 50 are still alive and free of an aortic event.

My uncle is almost 60 and doing fine. An aortic aneurysm can be life threatening. Back when I was 16 I had an echo done which said my aortic root was 256 cm and that my ascending aorta was 23 cm.

Teri Godfrey Miller. And a specific pattern of language and learning disabilities. Marfan syndrome is treated by addressing each issue as it arises and in particular preventive medication even for young.

I have Marfan syndrome a genetic disorder that affects the bodys connective tissue. What causes Marfan syndrome. The leading cause of death in Marfan syndrome is heart disease.

Average life expectancy -. 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. The average age at death for the 72 deceased patients was 32.

A newly recognized syndrome of Marfanoid habitus. Median estimate male. People who are properly diagnosed adapt their lifestyle and receive appropriate medical and surgical management can live a normal life span into the 70s.

Despite the high risk for Marfan related cardiovascular problems the average life expectancy of those with Marfan syndrome is nearly 70 years. Hey everyone for context I have basically every single physical symptom of marfans besides visual difficulties. Family members have passed on from Marfans related deaths at the age of 29 39 42 43 60 and 65.

Life expectancy for my family members with Marfans hasnt been great but there is a range. The median cumulative probability of survival was 61 years significantly increased compared with the median survival of 47 years for patients with Marfan syndrome determined 30 years ago P. I play recreational basketball sail and ride a.

I think generally Marfans means lower life expectancy. An aortic aneurysm can cause the walls of the aorta to tear apart dissect and blood to leak in the space created by the tear. Regular checkups are recommended to monitor the health of the heart valves and the aorta.

Heres what they had to say. Thats the killer in Marfans the aortic root swells up to three times the normal size and blood has a possibility of going backwards in the heart causing death. The Mighty teamed up with The Marfan Foundation to ask their community what they wished others understood about Marfan syndrome.

Marfan syndrome is a serious potentially life-threatening condition and an. The pain we feel cant be seen. Check out now the facts you probably did not know about.

The average life expectancy of those affected by Marfans is about 70. This poor survival was demonstrated in a series of 257 patients with the Marfan syndrome. I had a chance to be part of the study but i opted out because my aorta reached 5cm dilation so my cardiologist said it was time for surgery.

Both children and adults can live Marfan syndrome as long as they engage in appropriate medical care receive accurate information from their doctor and social support to make living with the disease more manageable. I had a 2D echocardiogram done to see if my aortic root is larger than normal and luckily its not. Posting this as a separate comment because I just looked it up.

95 CI was for men 37 years 228512 and for women 46 years 395525. 63 years 95 CI. There is a 50 percent chance that a person with Marfan syndrome will pass along the genetic mutation each time they have a child.

The life expectancy in this syndrome has increased to greater than 25 since 1972. 73 years 95 CI. The thought of an early death does scare worry me but after having a successful surgery and staying on my beta-blocker I feel like I have a better chance of having a normal life expectancy.

When this happens it is called a spontaneous mutation. But some people with Marfan syndrome are the first in their family to have it. 3540 years is the average for someone who doesnt follow guidelines such as not exercising riding roller coasters and things like that but someone who does what their doctors tell them can live an average lifespan.

I am active I am fairly healthy and I have a positive approach to living with this condition. Now at the age of 27 I am married I have an amazing family most of whom have Marfan syndrome as well and I have traveled the world with my husband and some of my best friends. The biggest risk is an enlarged aorta the major artery taking blood away from the heart.

Survival curves were generated and data were analyzed.

Survival Causes Of Death And Cardiovascular Events In Patients With Marfan Syndrome Vanem 2018 Molecular Genetics Amp Genomic Medicine Wiley Online Library

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Separation In Genetic Pathogenesis Of Mutations In Fbn1 Tb5 Region Between Autosomal Dominant Acromelic Dysplasia And Marfan Syndrome Sun 2020 Birth Defects Research Wiley Online Library

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Survival Causes Of Death And Cardiovascular Events In Patients With Marfan Syndrome Vanem 2018 Molecular Genetics Amp Genomic Medicine Wiley Online Library

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Survival Causes Of Death And Cardiovascular Events In Patients With Marfan Syndrome Vanem 2018 Molecular Genetics Amp Genomic Medicine Wiley Online Library