A Science Fair Project Helps Promote Understanding of MHE Susan Wynn

For her fifth grade science fair project, my daughter, Andrea (left) asked her older sister, Nicole (right) what it felt like to have MHE.  She not only learned a lot, but the girls worked together to find ways to let people understand what Nicole and so many of you live with every day.  This project not only informed those attending the Science Fair; it also gave our family new insight into what it means to have MHE. We’re sharing this project with you, because it offers a unique perspective to those of us who love someone with MHE.   It also helped resolve some of the issues that come up when some children in a household have MHE while others do not.

Project:  What Does it Feel Like to Have MHE? Andrea wrote a report, giving a brief description of what MHE is and some of its effects, and included illustrations and photos to illustrate the information.  A “touch” board was made.  Nicole helped choose objects close in size and feel to her exostoses, and the girls attached them to the board and covered them with ace bandages.  People attending the Science Fair were then able to feel what “exostoses” are like. Andrea’s Goal:  “My goal for this project was to find out what it feels like to have MHE. In order to do this, I worked with my sister, Nicole, to figure out ways to duplicate the feeling of tumors throughout my body and to see how having these “tumors” affected different functions. First, we used gloves, and sewed marbles and rocks into them. I put them on and tested them by doing different activities. We duplicated other difficulties by using splints and ace bandages containing marbles and other objects and recorded the results.” Andrea’s Hypothesis: My hypothesis is that I can understand what it feels like to have MHE by using rocks, marbles and different sized balls to duplicate bone tumors (exostoses) in different parts of my body. Step 1: Andrea first interviewed Nicole about various aspects of life with MHE and included the interview on her poster.  These are just a few of the questions and answers: Q: How does MHE affect you physically? A: That is a very general question, because it affects so many things. I get tumors all over my body. I feel tired near all the time, and I feel a lot of pain. It makes it hard to do things that most kids normally do, like running laps at recess, wearing a backpack over my shoulder, sitting on the floor, walking through the hallways, writing anything, sitting on hard chairs. Q: You do not attend school for a full day. Why not? A: I do not attend school for a full day because I become too tired to do anything. Arrangements are made with the school so I take my classes in the morning and I get picked up early every day. I have to rest when I get home each day. Q:  Is it (physically) hard for you to write essays, take tests, midterms, etc.?  Explain. A: Yes.  I have sixteen tumors in my hands, which makes it very hard to write for long periods. Besides pain, I get very tired as well. Q:  What problems do you have sleeping? A:  Tumors press on the mattress, making it very hard to find a comfortable position. Q:  I know you are not able to ride the bus, but why is that? A:  The stairs are too tall for me to climb easily. In addition, there are a lot of vibrations that are very painful to me. Q: You do not take gym, or participate in sports.  Why not? A:  It is too painful and too tiring. It takes all my strength to get to and from my classes and then just to get through the regular classes. I am medically excused from gym class. I do special physical therapy exercises at home instead. Step 2:   The next step was to try and “duplicate” some of Nicole’s exostoses and see what they felt like and what affect they had.  Andrea and I both tried each of these activities, designed by Nicole.

Conclusions • Mobility is blocked and movement is difficult. I can start to understand why Nicole feels tired. • Tumors press on nerves and this is very, very painful. • Tumors around the joint affect mobility • Tumors can affect the way you walk and move • Different tumors do different things.  Some don’t necessarily cause big problems, but can be bothersome • When something presses against an exostoses, it can cause extreme pain • Tumors can really keep you from doing things because of the pain • I can understand why Nicole has problems writing and why it is hard for her to do homework and take tests which have essay answers

Method Metal rods were attached to front of right hip and upper  leg with ace bandages A marble was attached to an ankle immobilizer Different sized balls and marbles were placed in a leg immobilizer (with metal rods removed) and placed on my leg. Bouncy  ball placed on upper arm, held in place with ace bandage Bouncy ball and marble placed midway on outer side of upper arm Marble placed on shoulder, held in place with ace bandage Put on a glove and small rocks and marbles were placed in the glove approximately where some of Nicole’s tumors are located in her hand

Purpose To duplicate Nicole’s hip tumors and test mobility problems To duplicate one of Nicole’s ankle tumors To duplicate some of the tumors around and in back of  Nicole’s knee To duplicate one of Nicole’s tumors To duplicate Nicole’s tumors To duplicate one of Nicole’s tumors To duplicate Nicole’s tumors and test writing difficulties

Observations • had to walk at an angle, one step at a time. Could not walk down steps normally • felt fatigue from walking • very difficult to get to floor • not able to sit cross legged • very difficult to get up • This caused extreme pain and I couldn’t stand it. I had to take the brace off right away. • Could not move well, or walk • Very painful • This one was not very painful, but was annoying and did affect mobility • Very painful! • The pain was so terrible I had to take it off immediately • Using normal pencil hurt • It was difficult moving fingers • Squishy grip felt better because it molded to tumors, instead of pressing

Activites • walked up and down stairs • tried to sit on floor • tried to sit • cross-legged • tried to get up from floor • Could not perform any activities. This was too painful • Tried to walk • Moved arm in different directions • Lay down on floor to see how it might feel when trying to sleep • Tried to put on backpack • Wrote with regular pencil • Wrote with special pencil with squishy grip

Andrea’s Conclusion: “During the making of my project, discovering what it feels like to have MHE, I learned quite a bit. At first I thought it was just a disease in which bone tumors grow on your bones. Now I discovered the real meaning. MHE affects you physically and emotionally.  I have a completely new respect for people who are affected by MHE. I am glad that I chose to take upon this project because now I have an idea of which it is like to have bone tumors growing on my body.  I have learned how much strength and will it takes just to get through a day of school.  I never thought that it would hurt so much to the extent that I would have to scream and lay down on the floor trying to get the brace, or ace bandage filled with small rocks, marbles and rocks off my arm and leg. I never really understood what my sister and some of my friends were going through until I let Nicole show me their world. Although I will never know how it really feels, I will try to understand and try to be compassionate and caring.  I would like to thank my sister, Nicole, for showing me what it feels like to have MHE and for working with me for hours on this project, although she was tired.” Nicole assisted Andrea at the Science Fair, explaining MHE and how it impacted her.  As we had hoped, many people came over to view the project and learn about MHE.  It was a wonderful, empowering experience for Nicole as well as Andrea, and the final grade was…A+!

Home