Ollier's Disease Well I don`t know how to start, this is the first time i...

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Well I don`t know how to start, this is the first time i`m seeking on internet about ollier`s disease, and i`m finding a lot of information in many web sites.I`m from spain and i`m 23 years old. I would share opinions with other patients about the disease..It would be very important for me. I have ollier`s disease on my left body but I thought it was a very strange and inusual disease but now I realized not. I hope find somebody with this disease to talk about experiences but in Spain they aren`t this type of websites...Ok bye then...Sorry for my bad english.

[i:91f5379ff4]This message was automatically imported from the original Patient Experience[/i:91f5379ff4]

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  • Posted

    hi there!! im also suffering from olliers disease and its in the left of my body also! i was desperatly seeking for some one to talk to as noone seems to understand what im going through. hope u get back to me soon! meena xx
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  • Posted

    Hi i have a Nephew who is just 20 months and has just been diagnosed with Olliers. Both parents are going for a consultation in 3 weeks time so if i have any information i will pass this on to you.
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  • Posted

    [quote:4cc1a9c432=\"Meena\"]hi there!! im also suffering from olliers disease and its in the left of my body also! i was desperatly seeking for some one to talk to as noone seems to understand what im going through. hope u get back to me soon! meena xx[/quote:4cc1a9c432]

    dear meena, my son harry aged 15 yrs has olliers, we were told one year ago , he had fiberous displaysia, but dec 08, told he had olliers diesease, and they may operate on his arm , maybe later this year after another 6month review. sop harry is under ' active surveiliance ' and this is only his first year with this condition, his left arm is very weak and approx 6 inches short and he has some ' hotspots ' on some toes and just below his right knee joint and some fingers ( wish he broke last week ), he does get some pain, but he is coping, and we are trying to treat him like a normal teenager , he also has dyslexia and this is all so unfair as he is a lovley , super boy , and we all love him to bits. let me know how you get on, and if you feel better doing email, i can pass you my details ## take care, talk soon and stay positive ######

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  • Posted

    [quote:abcd938759=\"B.\"]Well I don`t know how to start, this is the first time i`m seeking on internet about ollier`s disease, and i`m finding a lot of information in many web sites.I`m from spain and i`m 23 years old. I would share opinions with other patients about the disease..It would be very important for me. I have ollier`s disease on my left body but I thought it was a very strange and inusual disease but now I realized not. I hope find somebody with this disease to talk about experiences but in Spain they aren`t this type of websites...Ok bye then...Sorry for my bad english.

    [i:abcd938759]This message was automatically imported from the original Patient Experience[/i:abcd938759][/quote:abcd938759]

    .

    ola ! i cannot write or speak very good spanish, but my dad lives in spain, near to cadiz. my son harry aged 15 years old, has just had confirmation, he has olliers diesease, first in nov 07 , he was told he had fiberous displaysia, but in dec 08, we were told he had ollier diesease, he has a very weak shorter left arm, some 'tumours ' in some toes and just below the right knee and some fingers ( which he broke last week in school ). we are under active surviellance with the doctors, but feel no one knows very much about this condition , but feel we are sitting on a time bomb and this is our first year with this condition. if you feel better emailing , i can post details for you to reply to , take care and stay positive, adios xxx

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  • Posted

    DEAR MEENA, I AM SLUMMY MUMMY, HAVE BEEN TALKING TO SHAVER911 AND JOYCE AND THEY ARE VERY POSITIVE ABOUT OLLIERS DISEASE, PLS CAN YOU CHECK OUT, EXPERIANCE PATIENT SUPPORT

    OR TRY A GOOD SITE CALLED , GENETIC AND RARE CONDITIONS SITE AS IT HAS THE OPTIONS FOR SPANISH AND THIS WILL HELP YOU

    BUT TRY THE WEBSITE ON NATIONAL ORGAINSATION FOR RARE DIESEASES ( NORDS ), AGAIN, I WILL TRY TO FIND YOU ON THIS WEBSITE BUT VERY HARD, AS I LOOSE MY SELF ON THE LONG LIST OF WEBSITE AND LISTS. OR E MAIL ME

    SHAVER 911 IS IN OHIO , USA AND I AM IN ENGLAND.

    TAKE CARE MEENA, STAY STRONG AND POSITIVE ABOUT OLLIERS, YOU WILL WIN ,

    SLUMMY MUMMY ( LOUISE ) XXXX

    [color=green:f3bfeb9865][i:f3bfeb9865][size=9:f3bfeb9865][b:f3bfeb9865](Sorry email address has been deleted due to terms and conditions)

    If you wish to communicate directly with people, you should register, for free, with the forum (click Register in the menu list below the green banner above). You and other registered members will then be able to communicate with each other via Private Messaging (PM) or e-mail[/b:f3bfeb9865][/size:f3bfeb9865][/i:f3bfeb9865][/color:f3bfeb9865]

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  • Posted

    DEAR MEENA , DO YOU LIVE IN ENGLAND , SURREY ? WE LIVE IN SUFFOLK ENGLAND. MY SON HARRY AGED 15 YEARS OLD, HAS OLLIERS IN HIS LEFT ARM, AND WE HAVE JUST FOUND OUT DEC 08.

    WOULD LOVE TO TALK TO YOU TAKE CARE MEENA,

    LOUISE

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  • Posted

    still blogging on the system to keep intouch and the dates live and current.

    we are due a meeting with our local consultant in ipswich 2/3/09 to get some more direct answers to our questions about olliers and osteosarcoma and chondrosarcoma, as this is my main concern and worry, about my son harry aged 15 years old. if any of you in the group have any more info , please reply

    still very interested in keeping intouch with you all

    keep well

    will access the system later, ( when i get my go on the home computer ?)

    sometimes i check out the system at work. again , talk later

    love slummy mummy ( louise ) xxxx

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  • Posted

    Hey everyone. I am 15 and have had ollier's disease since the age of 18 months. To date I have had 13 operations mainly on my leg, but i do have the disease on both hands, my right foot, both arms (although it is quite minor here) and on my ribs. To everyone who is new to the disease, I want to reassure you - the whole process may seem daunting and worrying now but just learn to take it one step at a time. If I hadn't, I know it would have been alot harder. I am happy to give advice or share experiences with anyone who would like to hear. Just let me know your e-mail address and I'll get back to you. :D

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  • Posted

    DEAR PATCHES

    SORRY TO ASK SUCH BASIC QUESTIONS ?

    ARE YOU IN ENGLAND AND ARE YOU A TEENAGE BOY, AS YOU ARE THE SAME AS MY HARRY, AGED 15 YEARS OLD

    HARRY HAS A SHORT LEFT ARM AND THAT IS WHERE HIS MAJOR TUMOUR IS. HE IS DUE A SCAN ON HIS PELVIS AREA AGAIN , MAY 21ST . SO FINGERS CROSSED ALL COMES BACK OK

    NICE TO HEAR FROM YOU, AND SUCH A POSTIVE MESSAGE

    AMAZING HOW MANY OPS YOU HAVE HAD, WE HAVENT GOT THEIR YET, SO HOPEFULLY WE WILL TALK AGAIN

    FROM SLUMMY MUMMY

    I HAVE EMAIL ****

    FROM LOUISE, IAN , HARRY AND BRANDON

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    If you wish to communicate directly with people, you should register, for free, with the forum (click Register in the menu list below the green banner above). You and other registered members will then be able to communicate with each other via Private Messaging (PM) or e-mail.)[/b:7e4d20fead] [/i:7e4d20fead][/size:7e4d20fead][/color:7e4d20fead]

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  • Posted

    Hey slummymummy

    I live in southern england and am a 15 year old girl. I hope all the scans go well for you and Harry. My right leg seems to be similar to Harry's arm - quite a bit shorter than my other leg. What treatment have you have been offered to deal with it? I have had 4 leg lengthenings and in total over 12 years have gained 44cm back onto it. This process uses a frame called an elizeroff frame. It is quite invasive and is fairly painful for the first few months but with astonishing effects. I had mine on for around 8 months but I'm pretty sure it wouldn't be so long if it was on an arm because obviously its a shorter limb. Feel free to ask if you have any questions about the disease or treatments smile

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