Hereditary Multiple Exostoses Support Group

UK Registered Charity Number 1091069
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Showing comments 1 to 10 of 90 | Next | Last
Clare Clapham
Posts: 110
Comment
thank you
Sat October 01, 2011, 20:47:23
My son Dane has recently had a triple operation, removing 3 bumps from his knee, shoulder and finger. We have recieved tremenous support from the group, in particular from Christine Spencer (chair) and her son Ryan (youth chair). I would like to take this opportunity to publicly thank them both for everything they have done, from texts and emails to phone calls, you have been brilliant, thank you from the bottom of my heart. I am now lucky to call you my friends. Thanks again, xxxxxxxxx
carolanne anderson
Posts: 110
Comment
update
Sat July 30, 2011, 08:04:43
hi everyone just thought I would share the good news with you all. Seonaid is for nowcancer free. we got the good news last week, she will stillhave three monthly scans for a very long time, but hey we can cope with that. she stillhas a way to go healing wise and will have reconstruction surgery next year.
Ceitidh is due to have a hip op in september in Edinburgh.
Anonymous
Posts: 110
Comment
scaring
Thu June 30, 2011, 14:22:02
Hi Anne
when my eldest daughter had surgery on her wrist, she was teased at school, my GP issued us with silicone gel that I put on her scar and held it in place with a plaster. It worked
Anne Travi
Posts: 110
Comment
scaring
Thu June 23, 2011, 20:50:50
Hello everyone,
my vain, 7 year old future ballerina good fairy daughter, will be having her first surgery in 3 months time on her leg and finger. My husband has HME but has not given him any concern. My daughter's worry is that Daddy has a scar which she doesn't like and is very anxious that her scar will not be like that. Whilst this may sound pathetic, to my angel it isn't. Does anyone use a lotion or preparation on the skin site to be operated on to reduce the effects of scarring?
Thanks
Anne
carolanne anderson
Posts: 110
Comment
update
Wed June 15, 2011, 15:42:51
Hi everyone just another wee update on the children. Ceitidh had her op on her knee 2 weeks ago allwent well and she is now back at school part time. Gav was operated on last week by Daniel, he had 2 lumps removed from behind his knee one from his shoulder and one from his wrist. we are now home and he is recovering slowley. Seonaid continues to heal and is due back at hospital in July. hope you all are well xx
Clare Clapham
Posts: 110
Comment
friend??
Fri June 03, 2011, 14:10:25
Hi I have 2 children both with HME my son Dane is 12 nearly 13 and is waiting for a date for a double op to remove 2 lumps. This will be at Stanmore hospital, we live in Suffolk and I'd like to know if there's anyone out there same age who Dane could talk to about his op's. This isn't the first one he's had and I know it wont be the last, but he'd love to chat to someone who knows what he's going through.
Thanks
Chris Hall
Posts: 110
Comment
Reply to "after childhood"
Wed June 01, 2011, 18:50:36
Hi Nirosha.

I was diagnosed at aged 3 with this condition. I have had one removed from my finger, as it was causing my nail to grow into my finger, other than that i have had no operations. I had 6 monthly appointment until aged 16 where i was discharged. Im 26 now and it looks like im going to have to have one at the back of my right leg removed, as it has started to grow again and its showing cancerous signs (ive actually been refered to the cancer specialists in Birmingham) Im waiting for their second opinion arriving. It is possible for problems to occur later in life. I was told the same as you, that they would stop growing with me. I think new developments since then have found that they can grow on there own. Hope this helps.

If you want to chat further mail me at chris_hall11@hotmail.com
Sam Bhushman
Posts: 110
Comment
My Friend with HME and Disabled Badge
Fri May 27, 2011, 19:07:30
My friend has HME and has numerous surgeries. She has applied for disabled badge and was unsuccessful. Can anyone share any stories on if they have been successful in getting a disabled badge.

Thanks,
-Sam
brogan
Posts: 110
Comment
Found a bone on 11 Month old baby.
Mon May 23, 2011, 18:37:53
Hi
im 19 years old and have 15 operations up to now, my biggest problem is my hips and my left elbow which is dislocated. i have a daughter who is 11 months old and recently found a lumpy bone on her right rib which is pretty prominent! Had a X-Ray and nothing showed up so the docter said it is probably cartilidge, just wondering anyone has had cartilidge that has grown in to a bone.
Doctors told me not to be concerned but i would rather know if she has HME, so i can keep a eye on it.
Any Comments my email is
Seyibaby.bmw@googlemail.com
Much Appreciated
Brogan
Ruby King
Posts: 110
Comment
Shoulder Pain
Mon May 23, 2011, 15:02:58
Hey, I was diagnosed with HME last May and have had triple surgery to remove 3 lumps because muscles were snatching on them. In the last few months i've had terrible pain in my shoulder that travels down my arm and into my hand as well and sometimes into my neck. Has anyone had the same sort of thing? If someone has, i...s there any solution? Also does anyone live in wiltshire, I don't know anyone near me who has it?
Showing comments 1 to 10 of 90 | Next | Last