Local man lives with rare disease

By Megan R. Harrell
Star Staff
mharrell@starhq.com

  
This week, Oct. 6-12, has been set aside across the nation as Wegener's Granulomatosis (WG) Awareness week. It is a rare disease that effects as few as one in 20,000 people, but is lethal if not treated.
   The disease causes the immune system to become overactive. White blood cells attack and destroy healthy organs and tissues in the body. WG strikes men and women of all ages, and ethnic origin.
   Leonard Whitehead of Hampton is the only man in Carter County currently being treated for WG. He has been fighting the disease for almost four years. Whitehead nearly died in 1999 before doctors were able to make a diagnosis. "Before it was over, I had most of the symptoms usually associated with WG and a few other problems besides," Whitehead said. "The pain was awful."
   WG was first discovered in 1950 by a German physician. There is no known cause of the disease that affects the sinuses, lungs, kidneys, and other body organs. WG usually presents with symptoms similar to those of sinusitis. Other symptoms include inflammation of the eyes, hearing difficulty, pleuritis, rashes, fever, fatigue, weight loss, arthritic pain, night sweats, and blood in urine.
   "If anyone has these symptoms that won't go away, they should ask the doctor to check for WG," Whitehead said. The test is called an ANCA test. If levels are high, it is an indication that the disease is active. It is a fairly simple and inexpensive procedure.
   Whitehead suffered with the disease for over a year before he was properly diagnosed. His symptoms began with a persistent cough, then graduated into more serious problems. Whitehead was bed-ridden for three months prior to his diagnosis. His hands swelled up so badly that he had to have his wedding band cut from his finger.
   "The priest gave me the last rites, and then they found out by trial and error what was wrong with me and put me on steroids," Whitehead said. "I began to recover immediately."
   Although Whitehead's pain decreased within hours of receiving the correct treatment, his recovery has been slow. He is currently in remission, however, a relapse could occur at anytime. Whitehead must stay on medication, and sees a specialist in Kingsport once a month. He said that his disease is controllable but not curable.
   He still suffers from muscular damage that occurred prior to his diagnosis and gets tired easily. "I will never get my strength back," Whitehead said. He also cannot be in direct sunlight, and suffers from memory loss and hearing impairment. He lives with permanent kidney damage as well.
   Whitehead believes it is important the public be well informed of WG. It is rare and relatively new on the medical scene, therefore, WG patients are often never diagnosed. Whitehead said WG patients are often treated for allergies and the disease is unresponsive to allergy medicine.
   Whitehead was diagnosed in Fairfax, Va., at what he considers one of the best hospitals in the country -- yet it still took doctors months to make a diagnosis. He is optimistic this year's WG Awareness Week will highlight the lethal disease unknown to many Americans.
   "If you know and understand a problem, no matter how bad it is you can deal with it," Whitehead said. "To not know is twice as bad."