A
female
age
26-29,
anonymous
writes:Please someone help:'( i feel as though my lifes over,i cant stop crying,i went to the doctors and have got told i have spine abifida, its in the lower part of my bck so it ok, but i also have a twisted spine, im an average bubbly teenage 15 year old girl and i never expected this,,problem is he said my kids when i have them my turn out with the disease, and ill have alot of problems when im pregnant:'( i have a phobea of needles too,my life feels like its ended, i never expected it to happen to me please i dont know what to do :'( im scared i wont get a husband when im older because they would want a normal girl, who can have normal kids, what do i doooo :(:(:(:( Reply to this Question
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reader, anonymous, writes (11 March 2011): hugs sweetie :))
Yes, find others with your same condition by utulizing searches for support groups and also anything thru your school in general that may have groups for people with medical conditions. I see you equal in my eyes doll... keep your head up, go about your normal life, and be yourself.
A
female
reader, GeeGee255  +, writes (11 March 2011):
 The best place to look for help is from other teens that have the same problem. Look online or near you for a support group they can tell you more about living with it than any doctor. Because they have it, he just treats it.
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reader, anonymous, writes (11 March 2011): I have that and it can't be too severe if it wasn't diagnosed from birth. While many of the other posters don't understand why it wasn't diagnosed at that time I can, because there are very marked differences in the magnitude of it. I wasn't diagnosed until I was 17.
Many people seem to think you'll be wheelchair bound from birth but that's not the case, although I do have a friend that is.
Trust me as someone with the same condition you're freaking out about nothing, it doesn't change anything in your life from before you found out, just means you have to take certain precautions which your doctor will outline to you. It's not a big deal and freaking out about it isn't going to change it or make it better.
If you're worried then just go back to your doctor and speak to them about it.
Don't worry about pregnancy you're only 15, just make sure you don't become pregnant accidentally. Seriously ensure that doesn't happen especially while your body is still growing and going trough puberty.
As for a husband you don't have to worry about that, it's not a major condition, if you had acute spina bifida then you would have been in a wheelchair since birth.
Look OP it sounds worse than it is. I've lived with it for over 30 years now and you know what the worst thing about it is? People don't believe me when I say I have it, because I'm strong, athletic and everything is absolutely normal and fine, I just have to make sure I don't put too much stress on my back. Other than that it's not a big deal at all.
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A
female
reader, Tisha-1 +, writes (11 March 2011):
 Hm. You might have this one: "Spina bifida occulta
"Spina bifida occulta is the least serious type of spina bifida. In this type of spina bifida, the opening in the spine is very small, with a gap in one or more vertebrae (disc-shaped bones of the spine). The opening in the spine is covered with skin, so the gap is not visible from the outside.
"Spina bifida occulta does not usually cause any symptoms and most people are unaware that they have the condition. In such cases, no treatment is required. In other cases, some symptoms may be apparent, such as bladder and bowel problems, or scoliosis, which is an abnormal curvature of the spine."
From: http://www.nhs.uk/conditions/Spina-bifida/Pages/Introduction.aspx
I would urge you to tell your parents and your doctor about your emotional distress following this diagnosis. There are services in place that should be able to help you cope with the diagnosis. It sounds as though you will be fine, I would expect you will get to live a quite normal ordinary boring life like everyone else!
Best wishes.
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A
female
reader, yomama65 +, writes (11 March 2011):
 Hi Honey! Spina Bifida is a congenital condition that is usually diagnosed at birth. It does seem strange that you just got the diagnosis now. I actually work for an agency in the US that works with kids who have your condition and I can tell you that nearly all of those kids do grow up and lead very normal, productive lives. It is true that your kids may be higher risk for the same condition, but you very well may be able to safely have children. Don't let one doctor's opinion completely discourage you. When you get older, you may want to get a few opinions. You'd be surprised at how differently some doctors look at a diagnosis. If you really wanted to get pregant someday,you would just need to find a doctor who specializes in high risk pregnancies. In terms of finding love, please don't let this diagnosis change your perception of WHO YOU ARE as a person. YOU are not a diagosis. You are a lovely young woman who most likely has a great personality, is intelligent and has ALOT to offer. So, please, whatever you do, don't stop loving yourself for the awesome girl you are, and if you do that, then yes, you will find love. You can count on it. :)
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reader, anonymous, writes (11 March 2011): This is verified as being by the original poster of the questionthey said i have had it since birth
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A
female
reader, CindyCares  +, writes (11 March 2011):
 Honey, are you sure you understood well what they told you ??
Spina bifida, you are born with it, it does not develop overtime. How can it have gone undected for 15 years ?, this is a condition that any pediatrician would recognize at once.
As for a "twisted spine " , that's not a very specific diagnosis ..... Didn't they say by any chance that you have scoliosis ?...as many girls develop it growing up .
In this case , ...it isn't at all such a big deal, except few serious cases that anyway can be corrected surgically.
And you can have children, you'll just perhaps have to opt for a C-section- not such a tragedy .
I think you got a bit confused, before getting so desperate , find a doctor who'll sit you down and will explain you exactly what is your condition and your therapy options.
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A
female
reader, Tisha-1 +, writes (11 March 2011):
Hi there, I looked this up for you: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002525/
Basically, most cases are diagnosed at birth, so you must have a very mild condition to only have it discovered at age 15. You are the same person you were the day before you received the diagnosis, and you have the capability of leading a perfectly normal and ordinary life.
I would say that as this is affecting you so much, you need to tell the doctor that you are having a major upset from the diagnosis and need counseling and support.
I expect there are support groups for people who have this diagnosis or other similar ones and they have been through exactly the same feelings you are experiencing. Talking with people who have 'been there, done that' may help you come to terms with your new reality.
So, tell your parents that you feel this way, get the doctor to refer you for support services and special care. Good luck to you.
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reader, anonymous, writes (11 March 2011): Wow, you've been given a lot to deal with at a very young age. It's so much to take in and you must be reeling right now.But, your life is NOT over! Definitely NOT over. There's lots of help and support out there. You'll obviously be discussing all of this with your parents. But why not make another appointment to see your GP again, take along a list of questions, because I am sure your head must be full of them right now.Your doctor said your children MIGHT (not definitely) have spina bifida.Did your GP discuss any treatment options with you, did he talk about surgery? Are you going to be referred to a specialist?Don't sit at home, worrying and wondering, building this up into a monster in your head that you cannot deal with.Speak with your parents. Speak with your doctor again. There are many people in this world who have overcome some truly terrible disabilities to live a fully and happy life. You can be one of those people too.With love and best wishes.
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A
male
reader, Cerberus_Raphael  +, writes (11 March 2011):
 Don't cry. You have all the reason in the world to keep being your bubbly self because this disease is a part of you but it does not define you. Its existence does not make you who you are and if the boys you meet cannot see that then you do not need them. Don't worry, there are plenty of men out there who will love you with or without this.
How severe is it? In any case, you are still a normal girl and there will be a boy who loves having a bubbly and sweet girl like you in their life. Who wouldn't? Do your parents love you any less? Or your friends if they know? Why should anyone else think less of you because of this or feel differently? Disease or no, you should not worry because this is not the end. Your life is far from over and you still have much to look forward to.
I hope that helps.
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