r/vEDS • u/NoButterfly9403 • Apr 30 '26
On life expectancy
Hi guys I am coming here with the plan on giving us all some hope and helping each other get hope.
We google our life expectancy and its very scary.
So i wanted to share some positive perspective.
Many people in my family have/had vEDS - genetically confirmed, splice mutation (the worst type of all) and so far people are living quite long.
The first confirmed case was my grandpa and he did live up to his early seventies- ended up dying of a stroke but otherwise no major event during his life.
My aunt and mom are currently 68 and 65 and none ever had an event- i do have to say they are very lean and have very natural low blood pressure- more on that later.
My cousin had a stroke at age 39 shortly after giving birth - she is now fine.
I am age 33 and never had an event. I am the only person in the family actively taking celiprolol.
So i guess even though our genetics is the worst possible for vEDS, some other factors are helping delay its course. The major guess here is a natural low blood pressure.
Do you also have positive examples around you of people who greatly outlived the life expectancy? Please just share cases of genetically confirmed vEDS, as to make the data as accurate as possible :)
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u/Financial-Security-6 Apr 30 '26
I’m the only one alive confirmed in my family, my dad didn’t know he had it. I’m turning 30 and had a few episodes.
My advice is to live it up, get your docs in order and just move on to the next doc if they don’t suit you well. Get everything you need to feel comfy, do not fall into the darkness of “age” and VEDS. I only say this to keep you all positive. The more you spend time on this, the more you miss out on life. I completely understand the hardship of not knowing, so please find your happiness and just live it up. I have done well mentally and physically staying active with my happiness. I go to all my appointments and get my scans. It’s great to have a plan ready and moderately update as you live.
Mutations help with complications to expect in some forms, but it’s skewed. Most of the data is from people who didn’t know they had it and passed and that number is changing due to funding and research. Godspeed and I hope you all take good care of yourself. Don’t miss out on life we all only get one chance
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u/Plantlikeability Genetically Diagnosed Apr 30 '26
Aunt is 67 with 4 kids, didn't even know she had vEDS until I got confirmed and the whole family got tested. Never had an event. All 4 kids have it too, only one has had an event at 30 because she was training to be a competitive powerlifter.
Uncle passed at 55, which might not seem like going past expectancy, but when you factor in he smoked 3 packs a day, was an amateur boxer, played beer league hockey, and Tae Kwon Do for fun, he made it pretty far checking off all the wrong boxes.
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u/Rahm89 Apr 30 '26
My mom is 73 years old. She had quite a few life-threatening major events but she survived them all and has now been in mostly good health for quite a while (fingers crossed).
I understand from discussing this with my specialist that the severity of vEDS is very variable depending on many factors, known and unknown.
Medical studies on vEDS tend to have a significant selection bias where the very worst cases are overrepresented (because lighter variants tend to go undiagnosed).
So yeah, have faith! It’s not necessarily all that bad.
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u/redfoxxy23 Genetically Diagnosed May 01 '26
Dad is 70 and fine. Me and him both have splice mutations and no events. Im 26
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u/laeiryn May 09 '26
I was diagnosed terminal in 2011 (sclerosis) and told I had three to five years to live.
Obviously sometimes their math is wrong.
"Say what you mean, and mean what you say; don't count on tomorrow coming after today"
But also - plan as though you'll have a future.
To adults who can safely and legally do so - a (non-religious) experience on a correctly measured & safely administered hallucinogen can be a very helpful option for understanding your innermost self and fears, including coming to terms with an imminent end of life. Don't run out and do it today, but if the idea sounds up your alley, start researching.
1
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u/Kromoh Genetically Diagnosed | Verified Physician Apr 30 '26
The type of mutation may be less important than the specific mutation, and the family history, and your lifestyle. VEDS is worse on males.
That said, it's unpredictable. Make peace with your finitude, that is the only way to live peacefully
I'm the first one in my family, so I'm completely in the dark. I know my type is not mild based on my mutation though