Santa Margarita Catholic High School

 

 

It hurt to pick up a pencil, walk to class and even get out of bed.

 

Ross Kirkbaumer was in pain and his twin sister, Blair, wanted to help, but didn’t know how.

 

“There wasn’t anything I could do,” said the SMCHS senior. “I felt helpless. I just wanted Ross to feel better.”

 

Ross Kirkbaumer, 17 also a senior at SMCHS, has ankylosing spondylitis, a form of arthritis that primarily affects the spine. It causes inflammation of the spinal joints that can lead to severe, chronic pain and discomfort. AS can also cause inflammation, pain and stiffness in other areas of the body such as the shoulders, hips, ribs, heels and joints of the hands and feet.

 

After years battling the pain, countless unsuccessful visits to doctors and being told it was “just growing pains,” Ross Kirkbaumer is now living nearly pain free thanks to a great doctor, medication and being active on SMCHS’ swimming and water polo teams, he says.

 

And his sister, Blair Kirkbaumer, is on a mission to raise awareness about a disease that is under recognized.

 

Blair Kirkbaumer, a passionate photographer, is using her artistic talents to raise money for the Spondylitis Association of America, a nonprofit organization which works to advance research, education and treatment for AS and related diseases.

 

This year, Blair Kirkbaumer created CardsthatCare.net. The Web site sells greeting cards made by Blair, which feature her photography. All proceeds from the card sales go to the Spondylitis Association of America. The cards sell for $10 for a package of three.

 

Family and friends helped spread the word about the charitable cause helping Blair to raise $1,420 for the SAA, a leader in finding a cure for AS and empowering those affected. On Dec. 18, SAA Executive Director Laurie Savage, visited Santa Margarita Catholic High School where Blair presented Savage with a $1,400 check.

 

“We are so grateful Blair has taken on this wonderful cause,” Savage said. “It’s a great example of what one person can do.”

 

During Savage’s visit Blair Kirkbaumer was presented with a “Dunne Good” award from Principal Ray Dunne.

 

“You are truly living Caritas Christi,” Dunne told the young philanthropist.

 

Caritas Christi, SMCHS’ motto, means the love of Christ.

 

For Blair Kirkbaumer, the project is a way to make a difference in the fight against AS, a disease that often left her feeling helpless as she watched her brother struggle with the pain associated with it.

 

“I never knew what I could do to help him,” Blair Kirkbaumer said. “Now that he’s better I just want to help spread the word about this disease.”

 

Blair Kirkbaumer has studied photography for the past two summers in New York including a pre-college program at New York University. She always wanted to create a charity making use of her photography and there was no better choice than the Spondylitis Association of America, she said.

 

“Blair and Ross have always been close and this was a wonderful way for her to show her love and dedication to her brother,” said Nicole Kirkbaumer, mother of Ross and Blair.

 

The $1,400 is just a start, Blair Kirkbaumer said.

 

“I hope to raise as much money as I can,” she said. “But more importantly I want to raise awareness about a disease that can be difficult to diagnosis.”

 

Researchers have found that AS affects at least 1 in every 200 adults, making it as common as rheumatoid arthritis, according to the Spondylitis Association of America.

There are at least half a million people with AS in the United States but likely more because the disease is under-recognized. AS is more prevalent than multiple sclerosis, cystic fibrosis and Lou Gehrig's disease combined.

 

“Until recently it was believed to be rare,” Savage said. “But it is not as rare as people think.”

 

The Spondylitis Association is working with primary care physicians so doctors can better recognize the disease and send those affected to the appropriate specialist. Although there is no known cure,there are treatment options for those afflicted that can reduce the pain and symptoms

 

It took years of visits to various doctors before Ross Kirkbaumer was diagnosed in the eighth grade.

 

Not knowing what caused the severe pain he endured was the worst part, he said.

Ross Kirkbaumer had to give up sports, suffered sleepless nights and some days the pain was so intense he couldn’t get out of bed.

 

“I felt like a really old person in a young person’s body,” he said. “It hurt to even walk.”

 

In eighth grade, when Ross Kirkbaumer was diagnosed with AS, it was both a relief and frustrating that one doctor could figure out in a short visit what had caused him years of pain.

 

Ross hopes that through his sister’s project the word can get out about AS and its prevalence.

 

“I want people to know there is hope,” he said. “You don’t have to live in pain.”

 

To purchase Cards that Care visit www.cardsthatcare.net

For information about spondylitis visit www.spondylitis.org.

 

To read the story on www.ocregister.com click here.