a's questions

[Guest guest]

Hi everyone,

I received a message a couple of days ago from a 14 year old girl who was

doing research on dwarfism as a part of a biology assignment. She found

me by way of my website. She sent me the following questions and I

responded the best I could and thought I would send you her questions and

my responses and see if you have anything you would like to add that I

could then pass on to her.

) Danette )

Spokane, Washington

http://www.geocities.com/hotsprings/villa/9405

Hi a,

I will do my best!

Let me know if you have any more questions.

) Danette )

Spokane, Washington

http://www.geocities.com/hotsprings/villa/9405

Hi Danette,

Thank you so much for doing this and answering my questions. Well I

have thought up a few questions. If you don't know the answer or

don't want to answer that is fine.

1. When you were born how much did you weigh and what was your

height?

I was 8 pounds and 21 inches long. My parents did not receive my

diagnosis until I was 3 1/2 years old.

2. As a child were you ever teased about you size and how did you

overcome it?

Oh yes, but I had a wonderful family that really helped. I also always

had at least one friend who always stuck with me although I was somewhat

of a loner. I developed craft talents and letter writing talents that

really helped out.

When I got to high school my parents decided to home school my brother

and me for reasons other than my disability and that was quite a

blessing.

3. Do you know what chromosome on which gene for the dwarfism is located

on?

Dwarfism itself is not a disease but a symptom of a disease. Dwarfism

can be defined as short stature (4'10 " or under) that is a result of a

disease. There are over 250 diseases that result in dwarfism. Some are

caused by a chromosomal problem but some are not. My disease that causes

dwarfism happens to be MPS - Morquio syndrome. To learn about some of

the other diseases that cause dwarfism go to http://www.lpaonline.org

4. Can you do normal things that normal height people can do?

Mostly, but I have to use adaptive equipment for many things. I have a

variety of sizes of stools in various places around the house and I am

somewhat famous for climbing on chairs etc. I use an electric wheelchair

to get around now, although I still walk around the house, and it is my

favorite stool. I stand on the seat ALL THE TIME which really startles

some people and they might say it's unsafe but it's a very natural part

of my life and I know how to do it in a safe manner. Modern technology

is really incredible and if you have the money a disabled person with any

form of disability can do almost anything. Pedal extensions for driving

are very common among people with dwarfism as is custom made clothing.

5. In not what can't you do or what is very hard for you to do?

I have found that I really don't have the desire to do things that I

can't do, say rock climbing or snow skiing, although I do believe that

because of modern technology if I really wanted to do these things I

would be able to find a way to do them.

6. What are some advantages to being your size?

7. What are some disadvantages?

These two are interesting questions for me because I have never thought

much about my being short statured as being an advantage or a

disadvantage. Part of that is because I have so many other medical

problems that being short is the least of my concerns! ) I do know

that if I were given a pill that would make me taller but not correct any

thing else I would not take it. I have always been short and I really

don't know anything different. It would so radically change my life to

be tall that I don't think I would want it.

8. Do you have a job? If so what is your occupation?

I have a degree in Counseling/Psychology and use it in working with

people of all ages with various forms of disabilities.

9. Can dwarfs have kids?

I don't think there are any that are physically incapable of having

children (although there may be a few forms of dwarfism that include

sterility) but often times it is not wise to do so because of the

smallness of the body. I know that it would be medically unwise for me

to do so. However, there are some dwarfs that have chosen to have their

own children and have been quite successful in doing so. Many also adopt

both nationally and internationally.