marfan syndrome life expectancy reddit
I always thought I had Marfans Syndrome. Mitral valve prolapse MVP however has remained.
Living With Marfan Syndrome
In conclusion life expectancy for patients with the Marfan syndrome has increased 25 since 1972.
. This is a subreddit for people living with Marfan Syndrome to come together and ask questions discuss issues and provide support. I am 21 years old and I have been lifting weights starting at 16 years old. Marfan syndrome is a multisystemic genetic condition affecting connective tissue.
Trying to gain muscle with Marfans. Basic and clinical research leading to better diagnosis and management. Average life expectancy - 60 years old.
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. Reasons for this dramatic increase may include 1 an overall improvement in population life expectancy 2 benefits arising from cardiovascular surgery and 3 greater proportion of milder cases due to increased frequency of diagnosis. 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.
But then Ive also read that people with Marfans have a normal life expectancy so I dont know what to think but Im leaning towards thinking negatively. The leading cause of death in Marfan syndrome is heart disease. Despite the high risk for Marfan related cardiovascular problems the average life expectancy of those with Marfan syndrome is nearly 70 years.
As always please refrain from giving medical advice that only a medical professional should provide to our amazing community of Pectus people. Basically that gene is mutated and creates mutated fibrillin which bonds to transforming growth factor beta a protein that noodles with your muscle and connective tissues. 50 median cumulative survival in the total cohort n 206 was 53 years for males and 72 years for females.
My cousins husband died of it unexpectedly he didnt know he had it in 2000. Marfan Syndrome Life Expectancy 1972 median survival 48 years 1993 median survival 72 years Why. A community for discussion of Pectus Excavatum.
Marfan syndrome-diagnosis and management. The average age at death for the 72 deceased patients was 32 years. There were 45 deaths representing 22 of the cohort.
I have undergone valve sparing aortic root replacement and cataract surgery. Marfan Syndrome is a genetic disorder that is carried on gene FBN1 which is responsible for encoding fibrillin-1 and fibrillin-2. I have always lifted heavy throughout every session contrary to what is advised by people with the syndrome I was not consistent as I would lift weights 3 months max and would stop for a couple of months until I start again.
Ad Over 27000 video lessons and other resources youre guaranteed to find what you need. Cardiac problems led to 52 of the 56. IAmA person who suffers from Marfan Syndrome.
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. 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. N Engl J.
Talk about your personal experiences ask for advice discuss surgery options meme about built-in cereal bowls etc. People who are properly diagnosed adapt their lifestyle and receive appropriate medical and surgical management can live a normal life span into the 70s. A detailed family history medical history.
Life expectancy and causes of death in the Marfan syndrome. 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. Mean age at death was 453 165 years.
One in 10 patients may have a high risk of death with this syndrome due to heart problems. Walker BA Halpern BL Kuzma JW McKusick VA. Im 22 years old and was diagnosed when I was 11 years old.
This poor survival was demonstrated in a series of 257 patients with the Marfan syndrome. With proper treatment they can live up to half the time a normal person would or longer. Check out now the facts you probably did not know about.
A total of 206 patients with Marfan syndrome were ascertained throughout genetic clinics in Wales and Scotland during the period 19701990. 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. With me being 24 Im thinking thats obviously not great.
You can ask me anything on how I live with this disorder. More common cardiac manifestations such as aortic dissection and aortic valve incompetence have been widely documented in the literature. Survival curves were generated and data were analyzed.
Nowadays people with Marfan syndrome live until age 70 which is comparable to the average life expectancy of the general population. With proper management the life expectancy of someone with Marfan syndrome approximates that of the general population. The average age of death was 32.
The diagnosis of Marfan syndrome is established in a proband by definition a person without a known family history of Marfan syndrome who has an FBN1 pathogenic variant known to be associated with Marfan. And from what Ive understood after primary operation the expected survival rate is around 10 years. It carries a reduced life expectancy largely dependent on cardiovascular complications.
The 2 major concern areas of Marfan Syndrome involve the eyes dislocated lenses nearsightedness etc and heart aortic aneurysm which is the enlargementbulge in a major artery that can grow over time.
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