Multiple Hereditary Exostoses

by Jessica, 9th Grade

Could you imagine having a bone disease called Multiple Hereditary Exostoses, where you can’t do a lot of things that other people can do? Do you even know what it is? Have you ever heard about Multiple Hereditary Exostoses?  Well if you don’t know about Multiple Hereditary Exostoses or even heard of it then I think you should read this. When you are finished reading this essay you will know what Multiple Hereditary Exostoses means, how it effects their life, what happens if their bones grow so big that the bone becomes painful? You will know one person's story that has Multiple Hereditary Exostoses, There will be questions answered by people that have Multiple Exostoses, three poems, one by a person that has MHE and two poems by a family member of someone who has MHE. I will also tell you where I found all this information. Well the people that have MHE say it means bumpy bones. There are many names for this bone disease. Some of them are Diaphyseal Aclasis, External Chondromatosis, Multiple Cartilaginous Exostoses, and Osteochondromatosis. Some Doctors say they are tumors but not the cancer kind. The Mhe grows on top of the reguler bone. Most of the time when the person stops growing the bone stops growing. Mhe is not contagious. It can only be passed down from parent to children. Some people could have Mhe  and not even know it. It doesn’t even show up in x-rays. there is also that one day the person might be able to do something and the next day you might not be able to. Mhe is a rare disease, few have it. Do you know someone who has Mhe? Do you know how it feels to have Mhe? It  is very hard to have this disease. It is hard to keep up with other people. Mhe limits you on  what you can do, then when you get pain sometimes it hurts so bad that you won’t move from the spot you are in or you will try to deal with the pain. The only thing is that you have to use all your strength to move. And that is the hardest thing you will ever do (at least that is the way it feels). People treat you different because they know you have something wrong with you. People tease you and leave you behind when you can’t keep up with them. You can’t walk up and down stair most of the time. It is hard to walk a long time too. Do you know what Mhe means to the person who has
it? Well to them it means pain, stress, and not being able to keep up with other people. That is the 3 main things Mhe means to someone that has Mhe. There are more things that Mhe means to the person, who has Mhe but pain, stress and not being able to keep up others mean a lot because it hurts the person inside. They think those things are what Mhe is because that’s what
they feel. Do you know how many things people with Mhe can do? Do you know how many things they can’t do? well they can go swimming, read, they can have fun they only have to
watch everything they do. They can’t do a lot like run, jump, hop, skip, climb, throw, wrestle, play basketball, play volleyball, and play contact sports. they also can’t do things for a long time like write, type, walk, use reagular scissors, play P.E., sit, carry books or lunch trays, getting up, getting dressed, reaching a locker, and  raising your hand to answer a question that the teacher gives you. Do you know how it effects their life? It effects their life because of the pain the person has to go through and the pain the family has to go through. They have to deal with schools, C.S.E or I.E.P’s (meetings), What the person can and can’t do, Make sure that the person doesn’t fall, and make sure that the person gets surgery when he/she needs it.
Do you know how it can effect thier loved ones? Well it does probably more then you will ever see. Just seeing thier loved one in pain all the time makes them think “Why did God choose them and not me”. But think could you ever bare seeing your loved one in pain all
the time with your own eyes. Then when they have to get surgeries or can’t play the thing you want to play. Do you know what happens when the bone grows so big that it becomes painful? Sometimes the pain gets so bad that you just have to scream that is when you need
to get surgery. Another way the person who has Mhe knows when he/she needs to get surgery. When the person get surgery the doctors chisel off your extra bone. Some bone can  grow up to the size of a  volleyball. Most bone get up to a size of a tennis ball. The normal size is a golfball for people with Mhe. That’s what happens when the bone  grows so big that it becomes too painful to handle. Do you know how Mhe effects schooling? Well first they can’t climb a lot of stairs and sometimes it is hard to wait on a elevator to get on the floor you need to get on. Then it is hard to write alot or fast. That is why some of them have a lap top computer called a
Alpha Smart 2000, it helps them write more but still it is hard to type. They also can’t use regular scissors, gluestick, and hold on pen and pencils (they shoot them across the room).
Do you know where the bones are located? Well they are located everywhere on the body. but the main places they are located on the body are on thier hands, wriat,arm,feet,toes,legs,ankles, hips, pelvis area, ribs,  skull, neck, and spine. That is only some of the places they are, they can even be under the finger nails.

Now here is a story of my life because I have Mhe. But my Mhe is worse. Well in April of 1999 I had to have surgery to help the pain go away. But within 24 hours I found out that I had a major blood clot. So I had to have another surgery. But then I ended up with 5 viruses in my leg. So I had to have 5 more surgeries. I had to have 4 units of blood. I had also lost half of my calf. I can’t walk right now. And in all of my life my mom and I had to fight for everything that I have now. I can’t dop many things other kids can do. In all my life I had to have 11 surgerys. I live a very difficult life. And I am not the only one that suffers from this. My family has suffered right along with me. Every friday night my sister and me go on chat to talk to other people that have Mhe.

Now here are some questions answered by people with Mhe:

What does Mhe mean to you? 
(Emmon) “tumors”
(Jessica) “extra bones”
(Nicole) “I am different but it also means that I
don’t take gym”

How does it effect your life?
(Emmon) “I can’t do somethings other people can do”
(Jessica) “ I can’t do a lot of things I would like to
do”
(Nicole) “I have to have home schooling and can’t play
a lot of things because my bones”

How does it effect your family?
(Jessica) “because we can’t do alot of things we would
like to do as a family”
(Nicole) “Mom and dad have to change their schedule
for me and when I get surgery my sister has to stay
over someone elses house”

How does it effect your friends?
(Emmon) “It really doesn’t effect my friends”
(Jessica) “We can’t play together for a long time”
(Nicole) “It doesn’t effect my friends at all”

How do people treat you when they know you have Mhe?
(Emmon) “some tease me, but almost all of the time
they leave me alone”
(Jessica) “tease me, ask me what happen to me, and
most of the time they just let me be”

How do you know when you need surgery?
(Emmon) “when the pain stays for 2 weeks”
(Jessica) “When it hurts too much to handle”

N
ow here are some questions from a sister of a person
that has Mhe:


What does Mhe mean to you?
(Haley) “Spending a lot of time with my mom at the
doctors”
(Andrea) “ just a name of a disease”

How do you feel when the person with Mhe is in pain?
(Haley) “Very difficult for me to see, sad”
To Jessi's Personal Page
MHE and Me Site Map