Living with tourettes.

rohan

Hey everyone. My name is Rohan. I am currently 21 years old. I am going to share my story, for the first time, with all of you.

I have Tourette Syndrome. Which is very hard to live with because of the nature of the syndrome that makes you do really weird movements and sounds. I don’t know how many of you actually know what that is but in my home country (South Africa) not a lot of people know about the condition. That made it really hard.

Like you would probably guess I was made fun of a lot in school. On numerous occasions I wished that somehow my life would just end. I had no desire to stay in this world. When I was younger I always had a low self esteem and I hated it when people only looked at me. But thankfully I got God in my life. God sent so many wonderful people on my way that always supported me and never judged me. He showed me His amazing love. But I still felt alone in the battle.

Then I saw a testimony of Jamie Grace.

It reminded me that I am not alone. And that God is always with me, with all of us and we must never give up fighting.

Thank you all and God bless you all!

 

Photo courtesy of YayImages.

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Rock Bottom

SAMSUNG

This is a summary of the hardest struggle of my life.

On February 28th, 2013, I began to have sever pain in my left hip. After doctor appointments, xrays, and MRIs, I was told that I had a type of benign tumor in the fatty tissue. Later another doctor said I had fatty necrosis. These two diagnoses were completely contradictory to each other. One was treated with rest and the other surgery. So far I had pain, swelling, warmth, and redness in the area.

We went to an orthopedic surgeon who opted to do a biopsy to determine what was going on. We agreed.

After the biopsy, the surgeon came out and told my mom that it was a tumor. I recovered from anesthesia uneventfully and went home that day. After about a week, my left foot started to turn colors. My mom rushed me to the ER while I screamed with every bump we hit on the way. The pain had begun to spread down my leg all the way to my foot. I was admitted to the hospital and then I was told that it was not a tumor nor fatty necrosis but Complex Regional Pain Syndrome or Reflex Sympathetic Dystrophy. I hit rock bottom when I began reading about the condition. After 8 days in the hospital I was discharged and was in the process of being enrolled in an intensive physical therapy program. Then my inscion split open and became infected. Next thing I know I’m being taken back to surgery to debris the wound. I was later admitted into another hospital and was discharged after about 21 days.

I was told by doctors that the pain was in my head or that I would always have pain.

Right before I was discharged from the second hospital the pain spread up the left side of my back and down my arm.

Finally I arrived at a hospital with doctors who knew how to treat CRPS. They placed an epidural in my back so that I could do the therapy needed to “cure” the pain. At this point I was in a wheelchair and couldn’t even stand wind moving across my skin.

After I was discharged from the third hospital (28+ days), I began an out patient program.¬†One day I woke up pain free, even though most people had told me that I’d always be in pain! Now I’m in remission from CRPS even though I know that at any point in time it could come back, I’m living my life to the fullest extent and Glory of God.

I’m a fighter because I never have up even though I desperately wanted to. Also, CRPS is a rare condition so please try to spread awareness!

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I will keep on fighting!

juan

My name is Juan Carlos Alicea, but they¬†call me JC. I was born on august 22, 1991 in Puerto Rico and because my lungs were not developed, I had to be on all sorts of equipment to help me breath.¬†By the time I was 8 months old, the doctors told my mother I was blind. The doctors also¬†told my mother that I was never going to make it but thanks to the support of my mother, family, and ¬†the lord, I¬†can say that I’m alive!

On Saturday, April 12th, I was invited to ReachFest, a Christian¬†music concert hosted by Reach-FM, which featured performances by MercyMe, Jamie Grace, Colton Dixon, Britt Nicole, and Citizen Way.¬†My mother was nice enough to give me 2 tickets to see the entire show last Christmas, 1 for me, and the other for my brother. Among seeing the acts, I got an opportunity to meet/greet the artists who made the¬†songs¬†that we hear on the radio. That is when¬†I was finally able to meet my¬†idol, Jamie Grace, the singer¬†behind the song “Fighter.”

When I went up to her, she asked me, “what’s your favorite song from me?” and I told her “Fighter is my favorite!” and she¬†dedicated¬†the song to me during the concert. I would like to give a shoutout to my friend Jamie Grace for helping me continue to keep on fighting. Thanks so much Jamie, you rock!

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