Post # 1
I was researching my condition for research updates, as I do once or twice a year, and found out my life expectancy is shorter than average. However, the article says, this can be helped by taking good care of health and wellness.
I am freaking out a little bit. I want to have a long, rich life, full of fun and challenge and love. I don’t want to die ever, and especially don’t want to die early.
Thanks for listening.
Post # 2
lauralaura123 : What condition is it? Surely it much not have that much of a dramatic effect or this is something your doctor would have discussed with you rather than you reading it on the internet.
I wouldn’t take too much stock in things you read online and talk your doctor if you are concerned.
Post # 3
zzar45 : Turner Syndrome..my doctors never told me about this, but what would be the point? I guess they didn’t want to upset me?
Post # 4
I know it must be a shock, but try not to be too upset by this and speak to your doctor. Life expectantcy is a guess – nothing more. As you said yourself, it can be improved with general lifestyle and wellness so work on being as healthy as you can be.
Look at Stephen Hawkin. He was only give 2 years to live when he was diagnosed with motor neurone disease in his 20s. He was in his 90s when he died…. The only certainty is that you (ike everyone else) will die… when is still very much up for discussion.
Post # 5
zzar45 : So I did some more research and most of the deaths were from heart disease. The average life expectancy is 10-12 years less than average, of 156 women observed, 15 passed away within the 25 years of the study.
Not as horrible as I thought.
Post # 7
<u>emilyjoanna :</u> oops yep – sorry my mistake. Quick google without my glasses on. Read 7 as 9.
Either way he lived a lot longer than expected
Post # 8
I think that there are several things to say.
First of all, life expectancy figures are based on the past and not current or future treatment. By the time you approach the age at which you might have to worry, medical knowledge will have improved immensely. So the chances are that treatment will be very much advanced. So you won’t be in the same position as a 65 year old today.
Having any sort of condition (I know, I’ve had cancer) does tend to make people appreciate life. It also means that if there is something particular you wish to do, or you have certain ambitions, then do them earlier rather than later. Actually, everyone should be doing this, for who knows what tomorrow brings. Just think of the people caught up in Hurricane Michael.
Life is fun and you are young. Just make sure that you have your regular tests, cultivate a doctor that you trust, and eat well and exercise.
Compartmentalise worries about your sixties. Occasionally give money to research on Turner’s syndrome – and get on with life.
Gene therapy is proving very successful with muscular dystrophies. I’ve seen some of the figures. This is going to be a massive thing for anyone with a genetic disease. Time is on your side.
Post # 9
I know it’s scary to read something like that, but I wouldn’t panic and I would talk to your doctor about this. Just from my own small amount of research (so don’t just go off what I’m saying, talk to your doctor) – it’s a shortened AVERAGE life expectancy, meaning it takes into account, for example, people who developed heart conditions and/or diabetes as complications of the condition. If you are otherwise healthy, your life expectancy shouldn’t be affected by the condition alone.
Post # 10
nothing in life is guarenteed. just because a person is expected to live until their 80s, doesn’t mean they won’t get hit by a bus tomorrow.
take care of yourself, live you life, and do the best you can.
Post # 11
It also looks like that study was done in 2011. There are always new treatments coming out. It sounds like you should easily live until your 70s. And keep in mind that the only reason a healthy person’s life expectancy is so long right now is because medicines and procedures are keeping them alive. You’ll be in the same boat as the rest of us. It just sounds like you need to work a bit harder to keep your heart healthy. And again, shouldn’t we all? Heart disease is already the number one cause of death in America. Eat healthy and exercise. That goes for you, and for the rest of us. Make sure you go to the doctor frequently for check ups, so that anything that needs treatment can be found early on.
Post # 12
lovelyruby : this 100%, bee.
Also sending hugs your way. My little sister has Turner Syndrome. I know how difficult it can be in regards to how rare it is and how little information is out there. We have never ‘met’ anyone else with Turner Syndrome so I was surprised to see it in your post. You’re not alone, bee. Please focus on your health and living a full happy life.
Post # 13
lauralaura123 : my brother was a perfectly normal healthy 27 year old, and then a drunk driver mowed him down while he was cycling home from work and killed him.
ALL of our lives could turn out to be far shorter than expected, and it could have nothing to do with any disease or illness. There’s nothing you can do but live your life to its fullest.
Post # 14
lauralaura123 : Hi bee. I have a chronic illness and I know how difficult that can be sometimes. Talk to your doctor and see what you learn about life expectancy. Hang in there, and if you want a good chronic illness support page check out The Mighty. Sending good vibes your way!
Post # 15
ohdarling : thank you! I have found only one book about it that’s not medical :”The Condition”, about a woman with TS who is dealing with family and love issues. I liked it.