marfan syndrome life expectancy reddit
Marfan syndrome is a serious potentially life-threatening condition and an. Hey everyone for context I have basically every single physical symptom of marfans besides visual difficulties.
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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.
. I am 38 right now and happy to be here. The Mighty teamed up with The Marfan Foundation to ask their community what they wished others understood about Marfan syndrome. Advances in the management of the cardiovascular manifestations of this syndrome have led to a significant decrease in the death rate that is.
Life expectancy for my family members with Marfans hasnt been great but there is a range. Despite the high risk for Marfan related cardiovascular problems the average life expectancy of those with Marfan syndrome is nearly 70 years. I had a 2D echocardiogram done to see if my aortic root is larger than normal and luckily its not.
I play recreational basketball sail and ride a. Long thin hands and feet. Despite the high risk for Marfan related cardiovascular problems the average life expectancy of those with Marfan syndrome is nearly 70 years.
73 years 95 CI. 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. And a specific pattern of language and learning disabilities.
Am J Med Genet. The biggest risk is an enlarged aorta the major artery taking blood away from the heart. An aortic aneurysm can be life threatening.
My grandpa lived to be 62. I am active I am fairly healthy and I have a positive approach to living with this condition. Marfan Syndrome is a rare connective tissue disorder which affects your bones and joints and things such as that.
But some people with Marfan syndrome are the first in their family to have it. The life expectancy in this syndrome has increased to greater than 25 since 1972. People who are properly diagnosed adapt their lifestyle and receive appropriate medical and surgical management can live a normal life span into the 70s.
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. The most common problem associated with Marfan are aortic aneurysms which can then lead to aortic dissection a tear in the wall of the heart. Posting this as a separate comment because I just looked it up.
Marfan syndrome is treated by addressing each issue as it arises and in particular preventive medication even for young. I think generally Marfans means lower life expectancy. 95 CI was for men 37 years 228512 and for women 46 years 395525.
The figure of 30 years is somewhat old and was represents untreated cases. What causes Marfan syndrome. The leading cause of death in Marfan syndrome is heart disease.
A detailed family history medical history. This is a life threatening problem and the most common cause of death in people with Marfan. Regular checkups are recommended to monitor the health of the heart valves and the aorta.
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. Heres what they had to say. 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.
Nowadays people with Marfan syndrome live until age 70 which is comparable to the average life expectancy of the general population. Aortic Dissection and Marfan Syndrome Family Life. 708752 The median cumulative probability of aortic event-free survival when 50 are still alive and free of an aortic event.
I have Marfan syndrome a genetic disorder that affects the bodys connective tissue. 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. My uncle is almost 60 and doing fine.
63 years 95 CI. Average life expectancy -. Marfan syndrome is rare happening in about 1 in 5000 people.
Survival curves were generated and data were analyzed. Your case may be mild and youve been checked by a doctor so maybe it is unlikely to shorten your life. Its estimated that around 1 in 5000 people have this condition so it is rare but not so rare that doctors.
Its easy to go undiagnosed. There is a 50 percent chance that a person with Marfan syndrome will pass along the genetic mutation each time they have a child. Teri Godfrey Miller.
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. 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. 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.
It generally makes you very long and lanky but this condition comes with a lot more dangerous things. The average life expectancy of those affected by Marfans is about 70. 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.
Family members have passed on from Marfans related deaths at the age of 29 39 42 43 60 and 65. A newly recognized syndrome of Marfanoid habitus. The average age at death for the 72 deceased patients was 32.
1 Marfan syndrome is caused by a mutation in a gene called FBN1. The average age of death was 32. Median estimate male.
One in 10 patients may have a high risk of death with this syndrome due to heart problems. This poor survival was demonstrated in a series of 257 patients with the Marfan syndrome. 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.
This is a pretty good site to answer some common non-technical questions you may have I directed it to the life expectancy question. When this happens it is called a spontaneous mutation.
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