marfan syndrome life expectancy reddit
Children usually inherit the disorder from one of their parents. The average age of death was 32.
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Im 19 years old.
. 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. Connective tissue holds all the bodys cells organs and tissue together. This is a subreddit for people living with Marfan Syndrome to come together and ask questions discuss issues and provide support.
IAmA person who suffers from Marfan Syndrome. I knew I had Marfan syndrome and I knew that it made me different. The leading cause of death in Marfan syndrome is heart disease.
The biggest risk is an enlarged aorta the major artery taking blood away from the heart. 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. Despite the high risk for Marfan related cardiovascular problems the average life expectancy of those with Marfan syndrome is nearly 70 years.
Cardiac problems led to 52 of the 56. N Engl J. I have undergone valve sparing aortic root replacement and cataract surgery.
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. Nowadays people with Marfan syndrome live until age 70 which is comparable to the average life expectancy of the general population. One in 10 patients may have a high risk of death with this syndrome due to heart problems.
Despite all that I managed to live a normal life. Survival curves were generated and data were analyzed. 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.
In conclusion life expectancy for patients with the Marfan syndrome has increased 25 since 1972. A detailed family history medical history. I have Marfan syndrome a genetic disorder that affects the bodys connective tissue.
I am 6 45 with a wingspan exactly equal to my height. This poor survival was demonstrated in a series of 257 patients with the Marfan syndrome. 1 One in four people with Marfan syndrome develops the condition for unknown reasons.
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. Family members have passed on from Marfans related deaths at the age of 29 39 42 43 60 and 65. Average life expectancy - 60 years old.
Marfan syndrome is a genetic condition that affects the bodys connective tissue. 73 years 95 CI. It also plays an important role in helping the body grow and develop properly.
This study was performed to determine whether survival in the Marfan syndrome has changed since 1972 and to discern whether treatment medical or. 95 CI was for men 37 years 228512 and for women 46 years 395525. Marfan syndrome is treated by addressing each issue as it arises and in particular preventive medication even for young.
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 fre- quency of diagnosis. I weigh 146 pounds as of 2 weeks ago. Life expectancy for my family members with Marfans hasnt been great but there is a range.
Marfan syndrome is a disorder of the bodys connective tissues a group of tissues that maintain the structure of the body and support internal organs and other tissues. And from what Ive understood after primary operation the expected survival rate is around 10 years. Im 22 years old and was diagnosed when I was 11 years old.
Walker BA Halpern BL Kuzma JW McKusick VA. Life expectancy and causes of death in the Marfan syndrome. 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.
Can anyone help me figure out if I have Marfans syndrome. Life expectancy in the Marfan syndrome - PubMed Data reported in 1972 indicated that lifespan in patients with the Marfan syndrome is markedly shortened and that most deaths are cardiovascular. With proper treatment they can live up to half the time a normal person would or longer.
With me being 24 Im thinking thats obviously not great. Regular checkups are recommended to monitor the health of the heart valves and the aorta. You can ask me anything on how I live with this disorder.
Median estimate male. 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. The mutation limits the bodys ability to make proteins needed to build connective tissue.
708752 The median cumulative probability of aortic event-free survival when 50 are still alive and free of an aortic event. 1 A person with Marfan syndrome has a. The average age at death for the 72 deceased patients was 32 years.
I am 38 right now and happy to be here. Marfan syndrome is rare happening in about 1 in 5000 people. My dad is 6 my brother is 6 my mom is 54 and we have no history of Marfans in our family.
I play recreational basketball sail and ride a. Marfan syndrome-diagnosis and management. 63 years 95 CI.
Some people are only mildly affected by Marfan syndrome while others develop more serious symptoms. 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 always thought I had Marfans Syndrome.
1 Marfan syndrome is caused by a mutation in a gene called FBN1. My cousins husband died of it unexpectedly he didnt know he had it in 2000.
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