Greenfield designer conquering chronic health problems

Tessa Koller has velocardiofacial syndrome.
Posted at 5:32 PM, May 18, 2018
and last updated 2018-05-18 18:32:01-04

A near-death experience and a difficult disease have not stopped a Greenfield woman from nurturing her passion. Her approach to life can help anyone suffering from a chronic health condition.

Thirty-four-year-old Tessa Koller creates beauty, but she has to live with a beast. The beautiful part is designing wedding gowns to sell to local retailers  But the beast she fights daily? Chronic health issues.  

Two years ago, Koller was on a plane when she blacked out an almost died.

"Something ruptured in the lung and I had what was called a  pneumothorax which is just another fancy term for a lung collapse," Koller said. "I was very shocked by it."  

That's because her previous medical problems stemmed from her heart and not her lungs.
Koller was diagnosed with congenital heart disease at the age of 24. Her specific condition is called velocardiofacial syndrome.  

Koller explains that her condition also has another name.

"Twenty-two point two q 11 point two deletion syndrome. It means there are missing genes from the 22nd chromosome and it affects everything down the center of your body," she said. 

The disease causes heart irregularities, depression, intestinal problems and pain. 

"With 22Q you have immune deficiency. I have scoliosis, I have arthritis, fibromyalgia, chronic pain," said Koller. "You always want to make sure your mind is in the right place."

The designer travels around the globe raising awareness of 22Q. On May 20 the Milwaukee County Zoo will host "22Q at the Zoo." It's part of a nationwide effort to raise awareness of the syndrome.  For Koller, creating is her escape and solace. It keeps her mind off her ailments.

"Sewing is not just my escape," she said.

She runs "Tessa's Tailoring and Alterations" out of her home, and because of that she is well known among local models. She says helping women feel and look their best gives her great joy.

"Sewing and design have always provided me a direction. Something else to put my attention on. If you focus only on the negatives that can destroy your health," said Koller.  

And pouring her life into her passion keeps her mind off the ever-present health beast. And for anyone with chronic health problems, Koller offers this advice: "Don't lose hope. Seek people and support that will encourage you to keep going."