Wednesday, May 25, 2005 10:19 AM CDT
Coping with Addison's: Local teen recovering from rare disease
By SUE SMYSER,Features Writer
Bryan Clark and the late President John F. Kennedy likely have something in common — something neither wanted.
Clark, a 17-year-old from Gays, was positively diagnosed with Addison's Disease, and research indicates Kennedy also had the disease, said Brenda Clark, the teenager's mother.
While methods of treatment remain the same, today the medicine is readily available, but in Kennedy's day it was harder to come by. Although Kennedy didn't talk openly about his illness, various Internet reports indicate he had the disease and that he kept a stash of medicine to treat the disease in locations worldwide.
The disease is still rare and, left untreated, can be fatal. But the teen is now on the road to recovery.
In January and February Clark's body went through a barrage of changes. He became chronically fatigued and experienced substantial weight loss. At the time he was trying to work at a fast food restaurant after school and on weekends.
"I thought I was going to die," he said. "I got sicker and sicker."
Mrs. Clark and Bryan's dad, Roger, said their son was even planning his own funeral.
Normally Clark liked to tinker with the engine under the hood of his truck. He especially enjoyed working on cars and trucks. But he grew too exhausted to do anything.
The Clarks took their son to see Dr. Manoj Mathew in Mattoon.
"His neck, back and knees ached. We thought he had arthritis," Mrs. Clark said.
"Dr. Mathew X-rayed his knee and found lesions and tumors. They did a bone scan, but all were benign," she said.
Dr. Mathew said he knew the situation was serious. He said the teenager had a lot of things going on in his body and the fatigue he was experiencing was much more than normal fatigue.
"There was a lot of stuff going on, including a 10-pound weight loss in one week," Mathew said. "He challenged me."
In addition, the teen was sleeping in class and his grades were failing. He was a junior at Windsor High School at the time, although he was home-schooled for the remainder of this school year due to his illness.
"He was wasting away and getting tireder and tireder," Mrs. Clark said. "He was just skin and bones and his weight was down to 96 pounds."
Dr. Mathew said he thought the teen had a rare condition called Addison's Disease, but he wanted a confirmation. In April Mathew sent Clark to see a specialist in Champaign for a second opinion.
"He (Dr. Michael G. Jakoby in Champaign) agreed with Dr. Mathew," Mrs. Clark said.
Both doctors were very interested in Clark's case because of its rarity; both had seen only one other case.
"Only 10 people out of 1 million have Addison's Disease," Mrs. Clark said.
According to the National Institutes of Health, Addison's Disease is an endocrine or hormonal disorder that affects all ages and genders. Symptoms include weight loss, muscle weakness, fatigue, low blood pressure and sometimes darkening of the skin in both exposed and nonexposed parts of the body.
Sometimes only the adrenal gland is targeted by the disease but other glands also can be affected.
In Clark's case, he also had hypothyroidism.
According to the NIH, Addison's Disease happens when the adrenal glands don't produce enough of the hormone cortisol and, in some cases, the hormone aldosterone. The disease is also called adrenal insufficiency or hypocortisolism.
"My body turned on my adrenal glands and started fighting them," Clark said.
In addition, his blood pressure dropped extremely low.
Once the problem was diagnosed and he was on medicine, he improved quickly.
Hydrocortisone is used to treat the disease. The medicine replaces the hormones his adrenal glands are not making.
But there are side effects.
"The medicine can make bones brittle. It's like a synthetic steroid," Mrs. Clark said.
Ironically, at a time when doctors advise their patients to eat less salt, Clark's doctors tell him to eat all the salt he wants.
His salt level and blood pressure were low and his potassium level was high, so the salt would help the blood pressure to come up, Dr. Mathew explained.
The teenager can live a normal life as long as he takes his medicine, although he is at risk to develop diabetes. His doctor recommends wearing a wrist band to explain his medical condition.
Although he will take medicine for the rest of his life, he now has the energy to tinker with trucks again.
Contact Sue Smyser at ssmyser@jg-tc.com or call 238-6864.
Add your comments
Not already registered?
Then click Here.
Comment policy:
JG-TC.com encourages readers to engage in civil conversation with their neighbors. Comments that are submitted are not posted to the site immediately. They go into a queue to be moderated and may take several hours to be reviewed. Comments posted on Saturday may not be reviewed until Sunday afternoon.
In order to keep the page a set width, long lines (mostly long links) will be chopped. Try putting spaces in your links or consider using tinyurl.com to make a smaller link that you can include.
We will never edit or alter your comments, but we do reserve the right to remove comments that violate our code of conduct.
No comment may contain:
* Potentially libelous statements; such as accusing somebody of a crime, defamation of character, or statements that can harm somebody's reputation.
* Obscene, explicit, or racist language.
* Personal attacks, insults, threats, harassment or inciting violence.
* Commercial product promotions.
If you have any questions, please contact our moderator.
|
|
CLICK TO ENLARGE
|
