OLLIERS DIESEASE , SON AGED 15 YRS , ENGLAND

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I NEED TO TALK TO FAMILIES WHO ARE COPING WITH THIS CONDITION. I FEEL SERIOUSLY LACKING , WITH INFO. AND CAN ONLY SEE THE NEGATIVE SIDE TO THIS AT THE MOMENT. MY SON HARRY AGED 15 HAS ' HOT SPOTS ' IN HIS LEFT ARM , TOP AND BOTTOM, ALSO IN SOME FINGERS AND TOES AND BELOW THE KNEE JOINT ON RIGHT LEG. HE BROKE TWO FINGERS LAST WEEK ON HIS WEAK SIDE AND, HE MAY HAVE SURGERY ON HIS ARM , THIS YEAR, BUT THAT IS ALL IN THE FUTURE, AGAIN NOT SURE ABOUT THAT BIT, IF THE OPERATION IS FOR STRENGHT, LENGTH OR WHAT ???

ANY IDEAS OR INFO , I WOULD BE GRATEFUL , GOING A BIT CRAZY ON THIS AT THE MOMENT, NEED TO KNOW, HOW SERIOUS THIS MAY TURN TO CANCER ETC AND WHAT THE BENIFITS OF THE OPERATION

.

COME ON GUYS, NEED SOME CONTACT AND ## POSITIVE NEWS ###

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  • Posted

    Hi I am 33 years old and was diagnosed when I was 2 years old but they think I had it since I was born. I have a mirror image twin sister with no signs of the disease. When I was about 6 years old I had my first operation they took out part of my wrist bone due to the bone spurs covering the wrist. my second operation Iwas about 10 they took out part of the bone going from the wrist up about 4 inches and replaced it with hip bone. I can not remember why they performed that one it might have been for lesions in the bone. The only thing I can really tell you is that growning up with this disease was tough but if you allow him to do everything that normal kids do he will not even think about it. I have 2 daugters and neither one of them show signs of the disease. You still have pain and I do brake my fingers alot but it is just something that I live with. Your son is going to be fine. Do not worry about it I know that it is scarry for you as a mother but our kids are stronger than we think.
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  • Posted

    Just make sure you get the right Consultant, I recomend a hospital in London - Mr XXXX for anyone below 18 and Miss xxxx (I think thats her name) for adults. She has been out to S America where it is more common and knows her stuff.

    My 25 year old daughter has had for years only when we got Mr XXXX did she get the correct treatment. She is now a Nurse herself and manages very well.

    [size=9:44df664e0e][color=orange:44df664e0e](Sorry but Patient Admin have removed either a Consultants name, and/or a Doctors name from this posting as it is the policy of Patient UK not to publish these on this forum.)[/color:44df664e0e][color=orange:44df664e0e]

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  • Posted

    I lived with Encondroma since I was 8 (now 41) and have had 14 surgeries.

    Your son will be ok - the most important thing is to monitor the tumors and be sure they don't get so large that it comprimises the strength of the bone.

    I was a patient through my adolescent years at Shriner's Hospital @ the Oregon Health and Science Center in Portland, Oregon USA. It was a wonderful children's hospital and had knowledge of the disease.

    Perhaps you could send them your son's history and see if they could advise you further.

    Be encouraged - it is harder on the mom than the child. God Bless

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  • Posted

    Hi there,

    My son has olliers, he is now twenty. My advice is don't do anything until you really have too. In our experience through-out this disease Bryce has had many operations to correct leg lengths and I really do feel we done too much, causing Bryce to have his leg amputated. Just keep a very watchful eye on your disease, make sure you scan your whole body including your head so you can keep on top of everything.

    Kind Regards

    Donalda, mum with her own angel

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  • Posted

    HI i'm a sufferer of this disease and was diagnosed when I was 11, I'm now 31. Myself and my family had a week of thinking that I had cancer but was informed by a consultant at great ormand street hospital this was was what i had and that this condition was chronic but will not turn in to cancer. I've had two surgary's to correct a bowing in my left leg.

    I found the GOSH web site helpful. Your son will be fine and once he has stopped growing the symptoms reduce considerabley but he will have to stay active and to maintain a healthy weight. I myself have had a weight problem and this has caused a lot of disconfort and also my left leg muscles to go into spasum.

    Hope this has been helpfull.

    Midg a sufferer.

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