Letter to my classmates

Here are the notes form my presentation:

Today I want to tell you about Juvenile Arthritis. On August 26, 2013 I was diagnosed with Juvenile Idiopathic Arthritis and Enthesis-Related Arthritis. I found out after having x-rays and blood work.  My blood work came back positive for HLA-B27, a genetic marker in my blood. It got passed to me from one of my parents. I would like to share some facts about Juvenile Arthritis:

It is an auto immune disease, which means my body is attacking itself.

Juvenile arthritis is not contagious. There is no cure for Juvenile Arthritis and I will have it forever.

It is unpredictable, which means that every day I have different pains and problems.

300,000 children have it in the United States. 1 in every 1000 kids has arthritis.

There are only 250 Arthritis doctors in the United States.                     

It affects the joints, eyes, skin, organs, and gastreotestinal tract.

I currently have arthritis in my back, neck, ankles, knees, right wrist, fingers, toes, and hips. It is also affecting my skin and stomach. The doctor told us that it will eventually affect my eyes and I have to see a special eye doctor to keep my vision from getting bad.

I am at high risk for getting Lupus, Chrone’s Disease, Type 1 Diabetes, and Anklyosing Spondylitis.

It is important that I follow the doctor’s instructions so that I do not cause more damage to my body. If I don’t listen I could end up needing lots of surgeries and getting really sick. It is important that I am careful around others that are sick because it will make my symptoms worse.

The doctor doesn’t want me to carry books in my book bag or any heavy items, they do not want me to participate in sports that are hard on my joints, they don’t want me to participate in gym when I am in pain or if running is involved, and they want me to wear supportive shoes most of the time. When I am in a lot of pain or really tired it is important that I get lots of rest.

Now I have to go to physical therapy 2-3 days a week to help make my joints feel better.

I have to take arthritis medicine 2 times a day, Tylenol every day, and special vitamins.

One of my next treatments will require me to take chemotherapy. 

I may miss a lot of school to go to my appointments, go to therapy, to get tests, or because I am in too much pain.

Sometimes you may see me limping or walking slow that is because my joints hurt. In the morning I have the most pain and I have a hard time getting out bed because it hurts to move. If I sit out at gym or activities it is because I am having a bad pain day but I would much rather play with all my friends.

The doctors say that I could go into remission, which is a time when my arthritis is not painful. They do not know when it could happen or how long it will last. So my doctors, therapist, and parents are helping me try to get into a remission by trying different medicines and therapies.

On the outside I look normal and healthy, but on the inside my body hurts and makes me feel very tired. That is because it is always trying to fight off the arthritis gene. I try my best to hide my pain because I don’t want to be different and I want to have fun and play with my friends.

I hope this helps you understand what I am going through right now, so if one day I am acting grumpy it’s probably because I am in pain and I don’t want you to know.

If you have any questions please ask me or my parents. I also made a blog that you can find on the internet to learn more about my Juvenile Arthritis. It is www.bellavsarthritis.blogspot.com.

 

Thank you,

Bella Anderson