Wednesday, November 10

Kristie Tunick: Fighting to Live "Urgent read"

"What do you do when the medical system is unable to diagnose a 32 year old fashion genius, intelligent, beautiful women who is fighting to live due to her rare and complex medical symptoms?"

Can you imagine being trapped in your own body screaming and writhing in pain as your body locks up, leaving you paralyzed, a prisoner of your own body. Could you also imagine this being your life partner and soul mate. Well for Brian he see's his beautiful love endure a level 10 pain everyday for a disease that doctors can't decipher due to her rare and complex medical symptoms. Trapped in the body of her apartment in Philadelphia for the last three years where losing consciousness almost all day long has her writhing in pain but still fighting to live another day so she can marry the man thats been the wind beneath her wings through it all.

Kristie Tunick doesn't have time to wait.
She needs our help today so she can live a brighter future.
Everyday Brian has to go to work leaving Kristie alone in pain so they can fight to keep insurance.
Shes needs a doctor to her, time is of the essence.

Here's an excerpt from Kristie's Carepage written by her true love and soul mate.

"When the neurological symptoms started we had just gotten back from my brother’s wedding and had a wonderful time despite Kristie was still recovering from the flu, had infiltrates in her lungs. Kristie woke up, couldn't bare weight on her feet or breath very well. I rushed Kristie to the doctors who called 911. Her body locked up (became paralyzed). Kristie’s mouth glued shut and tongue froze, I had never seen anything like it before. Then her eyes closed and Kristie could barely talk or breath but made out get the doctor. I was scared to lose her, so I didn’t want to leave because I wasn’t sure if I would see Kristie again. I pushed the panic button, went out into the hallway and found her doctor since he had left about 10 minutes earlier down the hall notating. He rushed into her room with a lot of nurses and they wouldn’t let me in. Kristie said she couldn’t see as her eyes were glued shut but remembers them say get the paddles and didn’t want to get electrocuted. Before you know it, Kristie said she went to a very peaceful place and then woke up in the ICU screaming as they had her on a Bipap for the first time due to her CO2 being too high. I immediately called her father and he rushed down to the hospital. It seemed like days before I found out Kristie was alive, as we waited about an hour. I just was so happy she was on a non-invasive ventilator, not intubated."

Gastroparesis, neurocardiogenic syncope, autonomic neuropathy, non epileptic seizures. Then she was diagnosed with Small fiber neuropathy, chronic pancytopenia.

They have no idea what caused this. Can you imagine not knowing, Can you imagine the pain. Can you imagine still fighting to live and no one able find the cause.

They know she has a rare neurological Disease and possibly an autoimmune disease. She was also diagnosed with Stiff Person Syndrome at UCLA, but the regimen for the disease wasnt helping.

"Kristie then spent the next four months unable to move any body parts. Kristie was initially diagnosed with possible Stiff Person Syndrome at UCLA and was on the regimen for the disease but it wasn't working. Kristie was on IV Dilaudid from being in level 10 pain as she felt as if she was being crushed into the cement when she can't move. Kristie’s muscles get rigid and stiff. A Doctor said trying to move Kristie’s leg was like trying to lift the bed rail off the floor. Her neck would bulge, tongue got stuck making it hard to breath. To make sure she stayed alive, a pain doctor did a Baclafen trial to see if placing an Intrathecal Pump would work. Kristie could move for the first time. The downside of the pump is it can kill you from side effects while it’s in you. Because the pump was indentical to a hockey puck, very large, her surgeon said he was worried about placing it in such a petite and young women. He also felt bad as it would ruin her way of dressing because he knew her love for fashion. The pump had Baclafen, Dilauded and Bupivacaine put in it. The surgeon kept questioning if he should put it in because Kristie had signs of other disease. He was convinced something had to be abnormal in her MRI of her brain. But he went forward with it because they had no other choice."

Can you also imagine being 5 weeks pregnant and having no choice but to have an abortion and not having time to mourn the loss.

My heart truely goes out to this couple.

Kristie, you are a beautiful and strong person and although I don't know you I wish you the best, and biggest deserving dream one could possibly endure.

Poor Kristie has delt with this since 2007, Also her mother is dying from MS, Brians Father has prostate Cancer.

That is a plate to full for anyone.

There is tons more information on Kristie Tunick including a video by 20/20 that they never followed on which many believe if they had she might have gotten the publicity she needed for her desperate cries for help.

I discovered this story by Kandee Johnson. She's a wonderful, beautiful hearted soul with a wonderful talent. I read and view her blogs everyday and this is when I discoverd the story. Kandee spoke to Kristie and Brian on the phone to help them spread the word so Kristie can get help. Since Kandee posted this blog on November 5th many people have recognized Kristie and her heartbreaking story and plee for help.

I'm encouraging all of you to please pass this information forward whether its this blog, her facebook page or visit her on even a letter or two to a news channel. I personally wrote Wendy Williams in hopes that she might talk about it during her segment. One quick pass, one minute, even 30 seconds of your time might help spread the word.

Huge Hugs,

Brian's email:
Kristie's email is: (but it is very hard for her to type)

Look up Kristie Tunick on Facebook
Keep up on her Updates @ ( you'll have to create a login, but her whole story is there)

Visit Kandee Johnsons Blog about the story on Kristie.

Story by 20/20: Rare condition leaves woman immobilized.