marfan syndrome life expectancy reddit
What is my life expectancy with marfans syndrome. One of the most common inherited disorders affecting connective tissue Marfan syndrome MFS is an autosomal dominant condition with a reported incidence of 1 in 3000 to 5000 individuals12 The defect is in the FBN1 gene of chromosome 15 which produces fibrillin a connective tissue protein34 There is a broad range of clinical severity associated with MFS ranging from.
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People who are properly diagnosed adapt their lifestyle and receive appropriate medical and surgical management can live a normal life span into the 70s.
. 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. People who are accurately diagnosed adapt proper lifestyles and receive appropriate medical and surgical management may live for a normal life span into their 70s. Today individuals with Marfan syndrome can expect to live about 70 years or more.
Advances in the management of the cardiovascular manifestations of this syndrome have led to a significant decrease in the death rate that is associated with this condition. An aortic aneurysm can be life threatening. Deleted 8 yr.
Im wondering if any of you guys can help recommend some workouts that arent super straining on the heart and. I have marfan syndrome. To explore survival causes of death and the prevalence of cardiovascular events in a Norwegian Marfan syndrome MFS cohort.
My specialist has advised me to stay clear from heart intense things like lifting and benching etc. Hello I have a friend with Marfan Syndrome. Nowadays people with Marfan syndrome live until age 70 which is comparable to the average life expectancy of the general population.
I had a 2D echocardiogram done to see if my aortic root is larger than normal and luckily its not. 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. MFS is a heritable connective tissue disorder associated with reduced life expectancyprimarily due to aortic pathology.
With advances in the diagnosis evaluation and management of the organ abnormalities associated with Marfan syndrome the life expectancy for a person with the disease has nearly doubled in the past 25 years. A follow-up study of 84 MFS adults initially investigated in 20032004. Is there tests that can prolong my life expectancy Answered by Dr.
This is the cause of sudden death in this disorder. Check out now the facts you probably did not know about. New comments cannot be posted and votes cannot be cast.
Has the life expectancy for people with Marfan syndrome improved. Hey everyone Im a 16 year old male diagnosed with marfans and wanting to build some muscle as Im 64 and only weigh 63kg. This thread is archived.
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. 1 Marfan syndrome is caused by a mutation in a gene called FBN1. I know they say life expectancy for those with Marfans is similar to the general population so long as you seek proper medical care take your medicine etc.
I have been diagnosed with marfans for as long as i can remember im 21 years old 62 and 125 pounds very tall and skinny with the normal indent. The life expectancy in this syndrome has increased to greater than 25 since 1972. 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 0006.
Marfan syndrome is rare happening in about 1 in 5000 people. However there are no guarantees. If you havent done so yet you should be followed at.
The life expectancy for Marfan Syndrome may vary depending on the severity of symptoms the time of diagnosis the treatment offered and changes in lifestyle. I have been considering suggesting keto or other low carb options but it looks like theres not a lot of info out there on possible effects of keto for people with Marfan. My theory is the increased protein and reduced cardiovascular strain would probably increase life expectancy.
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. Life Expectancy of Someone With Marfan Syndrome Center. 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.
Privacy Trust Info. With proper diagnosis and appropriate timely treatment or surgical intervention and management a person can survive a. If it is detected before that happens Marfans sufferers sometimes have to get a surgery to add.
Marfans causes aortic root dilatation which means the main artery of the body becomes weak where it attaches to the heart and it can have a fatal burst aneurysm. Average life expectancy - 60 years old. 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.
Regular medical monitoring is essential for people with Marfan syndrome especially testing for changes in the heart and eye health. What causes Marfan syndrome.
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