Mortality rate with nf1

Does anyone have info about the mortality rate of people with nf1

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No but I have heard of people living into their 80’s before. Truthfully if they don’t find a cure and my case gets way worse, death wouldn’t be so bad. I live for my daughters and hope for a cure mainly for them. Never give up hope!

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Rates for malignancy in NF very greatly. Years ago the most common stat was 1-4%. More recent research has stated that the stats may be as high as 25% or higher. I believe the truth lies someplace in the middle and that mortality rates are around the 15% mark. The most common causes of mortality in NF are MPNST, a type of cancer that generally arises from an existing plexiform tumor, and vascular/ cerebrovascular disease.

Yes, some people with NF do live to be 80 and some do not. The average life span is reduced due to the number of deaths that occur in the less than age 40 group. This drags down the stats so that the AVERAGE life span for all NFers AS A GROUP is reduced. That doesn't mean that every person with NF lives a shortened life.

While I am aware of this information, I don't dwell on it. The only purpose it serves is to remind me to try to keep my daughter living as healthy a lifestyle as possible or that we need to contribute more to NF research.

Cindy

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I feel it all depends on your complete diagnosis.
If you have numerous Brain Tumors, chances are the more often you are going to run into other problems that may cause death.
I feel it is a hit and miss situation. Some may have plexiforms that turn malignant, brain tumors, optic gliomas....etc....!!
For some of us.... it is a wait and watch situation. From one MRI to another things can change very quickly. We do not know what is going to happen and we just do the best we possibly can for our children and adults alike.

RESEARCH - RESEARCH - RESEARCH... you have to be your own advocate!!!

Patti

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I was once told that just being diagnosed takes 15 years off of your expectancy. I don't think about it, I could die tomorrow from a car wreck, which would have nothing to do with NF.

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Sumatra, Being diagnosed with NF would not automatically take 15 years off your lifespan. The average lifespan is reduced overall because of those NF patients who die young, children or younger adults (MPNST, JMML, Renal artery disease or other vascular issues). This causes the overall average for the group to shift downwards. It does not necessarily mean that each individual with NF will live 15 years less. For example, the average life span is 70 some years for Americans. That doesn't mean that all Americans will only live to 70 years.

Besides while there is little doubt that the average for NFers is reduced, the studies that stipulate that particular number are not very reliable.

Patti is correct. It does depend on what features a particular person has but even then only a small portion of people with those certain high risk issues will develop malignancy or other life threatening situation.

Cindy

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Okay, I'm REALLY not trying to have the last word here LOL but there was something I forgot to mention. I know I've posted this before but.... They are actually doing research into how NF affects life span. Yes, its NF fruit fly research at the moment but that type of work may lead to new developments in time. Just thought that was interesting.

http://www.ncbi.nlm.nih.gov/pubmed/17369827

Cindy

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not sure man?................my dad has NF and is almost 80 and is healthy as a horse.........Live for today and what will be will be.....anybody could die tomorrow in an accident..ect.ect.............

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I don't think that's something you should worry too much about, focusing on an ending point. Live in the moment and make the best of your life, because the end for heros is that of ordinary men...

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Be here now.

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Its not always the NF there are many other factors and cause of death too.

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it's the only shore thing that comes to us all

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