my daughter has olliers disease
Posted , 3 users are following.
my daughter is now 16yrs old and was diagonsed with olliers around the age 7/8yrs old,she had fractured her leg when she was 4yrs old and the hospital found what they thought was a bone cyst around the fracture site,which they decided to keep an eye on and told us it was quite common. After a routine check up 3yrs later they realised something was not quite right with her leg and referred her to gt ormand street hospital in london,18mnths later she was diaognosed with olliers disease,affecting her right leg and pelvic bone,she does have a shortness in this leg by 3cm but as it does not affect her we decided against having the limb legnthened,she was discharged at 13yrs old and we never thout anymore about it,until her 3yr old brother woke up one morning and couldnt walk,it brought me bck to her condition,but my gp refused to check him for olliers as he said it is so rare,what the hospital didnt tell us was that the tumours are meant 2 b checked regually so we were referred bck to local hospital,who found that her whole right pelvic bone is one mass of tumours which was very worrying,we are now bck under the royal national orthapeadic hospital in london for the rest of her life as there is a small risk the tumours can turn malignant,so we have had a worrying time,and it is something that will b in our minds for the rest of our lives,however our daughter lives her life as normal and is something we have learned to live with,and we realise there are more unfortunate people out there than us and that she could have been affected more than she is,it the condition isnt very well known about by many and it would be great to hear from others with this condition
0 likes, 3 replies
Guest
Posted
THEN AFTER AN OUTPATIENTS VISIT TO STANMORE HOSPITAL , BASED IN LONDON, WE MET A CONSULTANT CALLED DEBBIE EASTWOOD, AND SHE FINALLY SENT A REPORT TO OUR CONSULTANT MR HUDSON, AT IPSWICH HOSPITAL, WITH FINAL DIAGNOSIS OF OLLIERS. HARRY HAS HIS LEFT ARM SEVERLY WEAKENED , APPROX 6 INCHES SHORTER, AND HAS HOT SPOTS IN IS TOES AND JUST BELOW THE RIGHT KNEE JOINT AND IN SOME FINGERS ( HE BROKEN LAST WEEK ). NOT SURE WHERE THIS IS GOING TO TAKE US, AS I THINK WE ARE JUST ON ACTIVE SURVEILANCE AT THE MOMENT, WHICH IS MIND BLOWING, LIKE YOU ARE SAT ON A BOMB ABOUT TO GO OFF , AND THIS IS ONLY OUR FIRST YEAR ON THIS. AND NO ONE KNOWS ANYTHING ABOUT THIS EITHER. THE DOCTORS LOOK AT YOU BLANK...... MY SON HAS DYSLEXIA ALSO, AND WE JUST GOT HIM ' OK' ABOUT THAT , WHEN THIS ONE LANDED IN OUR LAP..... DO YOU KNOW OF ANY GOOD SUPPORT GROUPS ABOUT OLLIERS. AGAIN WE WERE NEGATIVE LAST WEEK, BUT NOW THINKING ABOUT GOING PRIVATE HEALTH CARE, BUT NOW SURE IF THIS WOULD BE OF GREAT BENEFIT.... CONTACT ME BACK IF YOU CAN, WOULD LOVE TO TALK .
Guest
Posted
[color=green:73fd15d7ff][size=9:73fd15d7ff][i:73fd15d7ff][b:73fd15d7ff]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:73fd15d7ff][/i:73fd15d7ff][/size:73fd15d7ff][/color:73fd15d7ff]
SLUMMYMUMMY
Posted
HAVE YOU TRIED LOOKING AT NATIONAL ORGANISATION RARE DIESEASES. BUT THIS IS A GOOD SUPPORT GROUP, ALSO INSPIRE IS GOOD ALSO
TALK LATER, BUT AGAIN I FIND GETTING INTO THE WEBSITE TO THIS REPLY DIFFICULT
FROM SLUMMYMUMMY
[color=green:d6ab997ce0][size=9:d6ab997ce0][i:d6ab997ce0][b:d6ab997ce0](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:d6ab997ce0][/i:d6ab997ce0][/size:d6ab997ce0][/color:d6ab997ce0]