Stories of people who have diseases

This story is about a women who doesn't let her diseases get to her and how  she worked very hard to get to where she is right now.

Amy Thornton was struggling conceiving a child because of her Lupus.  Her first pregnancy lasted for about eight weeks but the sad thing is that the baby didn't develop enough.  She said  "This was very upsetting, but we were hopeful that it was just a ?blip? and that eventually we would be able to try to get pregnant again"; also with medication and steroids her lupus and all the side affects from the disease cleared up enough . "Although I had lupus for a long time, I managed to live a very normal life. I had played on varsity sports teams in high school, attended college and graduate school and held demanding jobs. " she said. I think this is very inspirational because if you can do something like that with a disease like hers you can do pretty much anything.  Later, in 2001 she was expecting twin boys! She made it through her pregnancy and the babies were healthy.  But when she was 36 years old she had a heart attack due to premature coronary artery disease. But everything is alright now, she's healthy . To me this story screams inspiration because of the fact that she never gave up hope when the burdens of her disease were laying down on her.

Cerebral Palsy

Another disease commonly intertwined with Schizencephaly is Cerebral Palsy (CP). CP is a group of diseases that affect the brain and nervous system. Like Shizenencephaly, it affects learning, movement, thinking, etc.

Many physicians commonly misdiagnose in patients as CP when they actually have Shizencephaly. I have both.  They can tell if people have  CP by birth injuries , lack of alertness, seizures and etc. They can diagnose Schizencephaly by MRI of the brain and symptoms similar to CP.

The CP affects my spine which has a slight curve. Because of this curve, my body leaned more to the left when I was younger. I had physical therapy for six years which  resulted in my having more of a straight posture. They had an exercise ball and would lay me on it and then pull  on my legs and arm to stretch my back. I also had to bend over to touch my toes multiple times just so they could check the curve of my spine. The curvature used to make my back hurt as a child, but because of therapy, as I grow older it doesn't hurt.

Tips about Bullying

I have been bullied all my life.  So here's some strategies to overcome the pain of it, and stand up for yourself.

1. If bullied, tell your parents.
    Telling is not tattling.

2. Tell a trusted teacher, counselor, principal, or have your parents talk to the school.

3. Do not retaliate or get angry.

4. Respond evenly and firmly or say nothing and walk away.

5. Develop friendships and stick up for each other.

6. Act confident.

7. Take a different route to and from school.

8. Avoid unsupervised areas of school.

9. Do not bring expensive items to school.

http://www.tooter4kids.com/prevention_tips.htm

Some of these tips might help you  succeed in the process of being bullied. It's not easy , but hey, everyone gets bullied no matter how well liked you are. No one is perfect , people have flaws and one of them could be your voice, or that you are in a wheel chair, or that you can't hear. But just know that you are not alone. 

Schizencephaly

Schizencephaly is a rare disease that affects the brain. It  means "split brain" because of the the absence of grey matter . It affects the different parts of your brain's clefts.  Doctors noticed that the babies with the disease have delayed skills such as speech and language skills . When they grow up, they are at risk of developing seizures or having fluid in the brain, a symptom  known as hydrocephalus.

I know a lot about this disease because I have it. Mine isn't as severe as some other people's. Some people are in wheel chairs and can't speak or communicate with others. I'm not in a wheel chair, but I have a talking disorder related to schizencephaly.  People have difficulty understanding me.  For instance, I could be asking a question and the teacher won't understand me, so I have to repeat myself multiple times. 

I've dealt with that all my life, but it still gets annoying  when I have to repeat myself  over and over again.  I encounter people who are inconsiderate . They see me as a disorder, not as the person I am. I've been called mentally retarded, a baby, and I've had people who try to mock my voice.  That is what really aggravates me. Disabilities aren't everything to a person's identity. It's not easy facing people who judge me based on my voice. 

Right now, there is no known cure for this disease, but with speech or physical therapy, you can improve step by step. I had to go through 13 to 14 years of speech and about four to five years of physical therapy. I face challenges day to day, dealing with learning and communicating with others. In another post, I will talk about ways to deal with bullying.
http://www.ninds.nih.gov/disorders/schizencephaly/schizencephaly.htm

http://www.google.com/imgres?hl=en&biw=1440&bih=712&tbm=isch&tbnid=FFYX-ykPVtx9fM:&imgrefurl=http://www.mr-tip.com/serv1.php%3Ftype%3Dimg%26img%3DBrain%2520MRI%2520Images%2520Axial%2520T2&docid=SW56opSz7BlKZM&imgurl=http://www.mr-tip.com/exam_gifs/brain_mri_transversal_t2_002.jpg&w=350&h=350&ei=eVuZUNZj863QAbPHgNAG&zoom=1&iact=rc&dur=0&sig=107303743919834560487&page=1&tbnh=115&tbnw=127&start=0&ndsp=28&ved=1t:429,r:0,s:0,i:143&tx=74&ty=89