Christine's Makeover

Christine Marchesano

Major events in our lives, no matter how traumatic, often turn out to being a blessing in the end. The outcome also alters the quality of life, our perspective of us and our attitude concerning the situation. Such was true when I was diagnosed with Ehler's Danlos syndrome, cranial settling and associated Chiari 1 malformation in March of 2007.

Facing brain and spinal surgery in May of 2007, although very frightening both for me and my family, it was something I knew I had to go through with an optimistic attitude. I also knew I had to face this ordeal head on and go through surgery, if I was going to get physically healthier and stop the progression of the cranial settling.

In answer to Dr. Bolognese's question at my sixth month appointment, "How has this experience improved the quality of your life?" I firmly believe that because of the Dr's intervention, the support system I have and my determining will and faith, this surgery has allowed me to look in the mirror and be confident with the person I am and break free from the emotional and physical scars of my condition I was born with. This is my story and it is my hope that by sharing my experience with Chiari and having surgery this will help support those who are at the beginning of the road facing similar situations.

I am now eight months past my surgery, feeling great and enjoying life again. Here is my story. (PDF)

Breath of Hope

Maja Cvetkovska

Confined to a wheelchair for years, Maja spent much of her life as a prisoner in her own body, suffering through excruciating spinal surgeries in her native Macedonia that left her unable to walk on her own, feed herself or even breathe comfortably. But since her most recent surgery in May, Maja has reached the point that she no longer uses a wheelchair. And while each step is a herculean effort, she can walk.

"Before the surgery, I can't move my legs, I can't move my hand, I can't breathe and I can't sleep because I can't breathe," Maja said recently.

A year ago, if she had tried to speak during one of her grueling physical therapy sessions, she would have gasped for air between sentences, said her physical therapist, Vince Burke.

"After the surgery, she had hope for the first time," Burke said.

Read Maja's story.

Watch Maja's video.

Marissa's Story

Marissa Irwin

Now age 20 and a professional model, Marissa Irwin was 12 years old when she developed a stomach ache. When the stomach pain recurred along with headaches and sore throats, her mother, Gayle, took the girl to the family doctor. From here, mother and daughter began a frightening five-year journey from specialist to specialist as Marissa’s condition deteriorated; in constant pain by her 15th birthday, she could no longer attend school and spent most days so weak and dizzy she could barely walk.

Read Marissa's story. (PDF)

My Journey

Leslie Witty

Leslie Witty’s pain was all in her head.

“I’ve always been prone to headaches,” the Warren County woman said. “I would take Tylenol or Advil and they would go away. It was nothing severe at all.”

Then came the day her headaches became a more serious problem.

Read Leslie's story.