Sugar Hill mom educates about Cushing?s syndrome

[~MaryO~]

http://www.checkbiotech.org/orphan_News_pe...aspx?infoId=363

 

May 16, 2007

Sugar Hill mom educates about Cushing's syndrome

By Melissa Wilson

 

Donna Sellers is on a mission. The 53-year-old woman from Sugar Hill devotes every day to taking care of her family and educating people in Gwinnett County ? and all over the United States - about a rare disease that affects her family every hour of every day.

 

Since Sellers' son, John, was 5 years old, she and her husband have been struggling with the now 8-year-old's battle with Cushing's syndrome. It's a rare disease that causes an overproduction of the hormone cortisol by the body's adrenal glands.

 

About 10 to 15 out of every million people are affected by the syndrome, and although Cushing's is more common in adults, the amount of children diagnosed with the disease is increasing.

 

In many cases, the overproduction of cortisol associated with Cushing's is caused by a tumor on the pituitary gland, located at the base of the brain. The tumor may stimulate the adrenal glands to secrete higher levels of the hormone. But a tumor on the adrenal glands, the lungs or other organ may also cause the increased release of the hormone.

 

Sellers said she noticed something was severely wrong with John when he began gaining excessive amounts of weight, was developing a mustache and was found to have stroke-level blood pressure readings, all at age 5.

 

After numerous visits to multiple doctors, a visit to an endocrinologist concluded with Sellers' worst fear: Doctors said John had a tumor the size of a baseball on his adrenal gland that would have to be removed. And more tests revealed the 5-year-old had Cushing's.

 

"I had to push for doctors to run tests," Sellers said. "They just thought he was obese, he needed a diet and exercise, but I knew there was something wrong. They didn't catch this earlier because no one knows about it. He started showing signs of Cushing's at age 2, but doctors don't know about it."

 

John underwent surgery in 2004 to remove the tumor from his left adrenal gland, which is located above the kidney.

 

"They (doctors) said when they removed the tumor, he'd be cured," Sellers said. "But the brain damage is still there and the tumors can reoccur; and to me that's not saying he's cured."

 

Although removing the tumor helped John lose the weight brought on the by the syndrome and lowered his levels of cortisol production, Sellers said he still has problems associated with Cushing's. They include developmental problems, such as poor fine motor skills, plus sleeping disorders, depression and anxiety.

 

"His maturity level is between a 2- and 5-year-old," Sellers said. "He's very smart, but he doesn't process things the same way a normal 8-year-old would. He's also a very clingy child. He suffers form anxiety and depression ? and it all stems from Cushing's."

 

Sellers said John is taking four medications to help him with the sleeping disorder and behavioral problems that have stemmed from the disease.

 

In addition to taking care of John, Sellers devotes her time to educating doctors, teachers and families about Cushing's syndrome.

 

She traveled to San Francisco, Calif., for a pediatric convention last October to speak to a room full of doctors about the disease.

 

"Ninety percent of doctors in that room last year said they wouldn't think to check for Cushing's if they saw the symptoms. This is why we've got to get the word out," Sellers said.

 

In addition to conventions and seminars, Sellers spends her days traveling throughout Gwinnett County asking local police and firemen if it's OK to place Cushing's brochures in their department lobbies and if they would be willing to help with fundraisers for Cushing's awareness.

 

When Sellers is not working to educate the community about Cushing's, she serves as a chairwoman for the Cushing's Support and Research Foundation.

 

"I'm on a soapbox about this seven days a week," Sellers said. "There's no real support group for people who suffer with this or for parents who have children who have Cushing's, so I try to help those people any way I can. I'm just here to support them."

[denney]

I am in the Atlanta area and am familiar with alot of pediatric endocrinologist in the area. I think it is truly amazing that she was able to finally get a diagnosis. Thanks for the information Mary.

 

den