Just a reminder that the survey on personal experiences with MHE and attitudes towards prenatal diagnosis will be available on the MHE Coalition website...
Hi Debby, How are you? Thanks I know she will shes a go getter, ha! ha! ha! ha! Take care, Barry Harper DEBBY CORNISH <debbyish13@...> wrote: I agree,...
Well -- I am doing -- ok. The cold weather isn't my favorite --- ahhaha. The hormone study drug has made SOME progress on the cancer. My 5th lumbar vertebra...
We're less than two weeks from our Gathering Date of July 21st! The MidWest Gathering is being hosted by Kris and family. Her son, Will, who is almost 12,...
my son is 7yrs old now. he was told he had this disorder at age 5. i would just like to ask everyone to pray for us. if there is anybody who child may have the...
The MHE Coalition Newsletter, #22, June 2006 has been posted to the "New" MHE Coalition Site and is ready for reading! www.mhecoalition.org To Our MHE...
I know I don't post much but I figure its time for an update. The boys and I are doing great. I tend to read more about.. pray for me this and pray for me...
Hi and Hugs to you. My son is 8. He was diagnosed at two. And that was after finding his first lump at 6 months old and having the doctor tell me repeatedly...
hi and hugs to you also. i can understand that. sometimes the doctors look at my son in amazement at how happy and normal he acts. they seem to be expecting a...
So I could use a little advice from all of you experts out there... I am 33. I live near Kansas City on the Kansas side. I have known I had MHE since I was...
Well, when the little ones are in pain since before they can remember they don't know it's supposed to hurt until it is really bad. For awhile I had the magic...
... it's supposed to hurt until it is really bad. For awhile I had the magic mommy touch. A good cuddle on the lap and a gentle massage. But now, he wants a...
I'm Heather and I'm 16, nearly 17. I've had HME since before I can remember, each of my brothers have it, my dad has it, etc etc. I'm getting to the age where...
Oh my! I can relate so much, Heather. My sisters have HME, my dad, etc...and, none have it as severely as I do. I have an arm like yours, likely - my left....
Hey i can also relate really well. My name is ashley and im nineteen. ive had this disease since i can remember but the just discovered about a year ago that i...
What's the difference between being diagnosed with osteochondromas, vs. MHE? Thanks! Nikki ashley_5788 <ashley_5788@...> wrote: Hey i can also relate...
Osteochondromas are the actual "knots" or "bumps" that are located, occur, on the bone. Having an osteochondroma does not mean a person has MHE. If a person...
yeah that made a lot of sense.. but i have something to add to it.. when you have osteochondromas the exostoses stop growing when you stop growing and they...
Hi- I just found this group on the internet. I am quite thankful. My 3-year-old son was recently diagnosed with MHE. We've seen the orthopedist once, and...
Kathy: Welcome to the group.? The tumors on his toes can certainly be painful without provocation, not to mention walking and the addition of wearing shoes.? I...
Hi Kathy, My daughter, who just turned 9, has bumps on her feet as well. We had problems with getting shoes to feel right and her socks gave her probems as...
One more thing to keep in mind: I was diagnosed at age 5 and a couple of years later, was diagnosed with an adolescent bunion. 15 years later in my 20's, I...
Kathy, My son & I both have MHE. I find the "CROCS" shoes to be very comfortable. They are roomy and do not apply pressure to the bumps. They cushion the...
Hello my Name is Ros ... Im 51 yrs old and just been told by my doctor that im suffering with exotosis .. I have been booked into hospital for surgery in...
... My name is ashley and im nineteen. i was diagnosed when i was three. I have had twelve surgeries total because of the disease. i have acutally never had...
Im Kevin im also 19 and diagnosed with MHE when i was three. Luckily ive only had six surgeries. Although i dont have painful ones or bothersome ones in my...
