Roanoke, VA - Wegener's granulomatosis is a rare disease; affecting just a few every 100,000 people, including a woman in Roanoke.
Jenny Mays-DeLorenzo found out she had it when she was 17. She's 41 now, and it has been an uphill battle ever since.
At the age of 17, Mays was a star athlete who had her whole life in front of her until a few weeks after surgery on her sinuses.
"Because I was coughing and throwing up blood by the buckets full," she recalls.
About 17 doctors and some six weeks later, Jenny got her diagnosis. She was suffering from an extremely rare disease shared by just four other people in the country at the time of her diagnosis, according to Mays-DeLorenzo.
"It's Wegener's granulomatosis. It's an auto immune illness. It can really infect anything it wants to."
Over the next 23 years, Jenny would undergo nearly a dozen surgeries to remove masses that would form in her body. In the past two years, she has been forced onto dialysis as she awaits new kidneys.
"If I sit around a dwell on it and I try not to. You know, you ask the question, ‘Why me?' said DeLorenzo.
"She has been brave about it all and has weathered the storm. And we hope she will continue to weather the storm for many years to come," said Jenny's fatther, Clarence Mays.
But now the challenge is as much about money as it is the disease. Out of pocket expenses after insurance will run into the hundreds of thousands over the rest of her lifetime.
But as Jenny has proven many times in the past, challenges are there to overcome.
"Maybe it's because I'm supposed to be the one that shares the information about Wegener's and how it affects other people. Because most people in my position, I think, would have given up."
Jenny is now working with the Memphis nonprofit National Foundation for Transplants, which helps people raise money to offset the costs associated with transplants.
A "dance" is being held on March 9 in Roanoke, which includes a silent auction with all proceeds going to Jenny. That's at Mountain View Center at 714 13th St. SW in Roanoke. Tickets are $35 per person or $65 per couple. The William Penn Band will be performing.
Donations can be made online here where you can select Jenny under the "Find an NFT Patient" function.
Wednesday, June 19 2013 6:13 PM EDT2013-06-19 22:13:11 GMT
The murder arrest of a Harrisburg man already facing trial on sex crimes has shed new light on an old problem with Pennsylvania's criminal justice system.More >>
The murder arrest of a Harrisburg man already facing trial on sex crimes has shed new light on an old problem with Pennsylvania's criminal justice system, and prosecutors and advocates are encouraging lawmakers to finally act.More >>
Wednesday, June 19 2013 5:47 PM EDT2013-06-19 21:47:23 GMT
Harrisburg's police union has reached a tentative agreement with the city receiver's office that would lift a requirement for uniformed police officers to live inside the city limits. Jason Brinker, presidentMore >>
Harrisburg's police union has reached a tentative agreement with the city receiver's office that would lift a requirement for uniformed police officers to live inside the city limits.More >>
Wednesday, June 19 2013 4:48 PM EDT2013-06-19 20:48:33 GMT
Someone broke into a pizza shop and stole the tip jar early Wednesday morning, according to Mechanicsburg Police. Police said the thief used a piece of concrete to smash through the front glass door ofMore >>
Someone broke into a pizza shop and stole the tip jar early Wednesday morning, according to Mechanicsburg Police. More >>
Wednesday, June 19 2013 1:25 PM EDT2013-06-19 17:25:45 GMT
Joe Wissler said back on July 11, 2010 his son was attacked, from behind and struck in the head with an object. His son, Joe Wissler IV suffered brain damage and almost three years after, is still in aMore >>
Back on July 11, 2010 Joe Wissler said his son was assaulted in Steelton and suffered brain damage. With the three year anniversary of the attack approaching his dedicated father is hoping someone will step forward. More >>
Wednesday, June 19 2013 10:10 AM EDT2013-06-19 14:10:34 GMT
One person was flown to the hospital this morning and another taken by ambulance after a multiple vehicle accident on Route 22/322.The accident blocked traffic on both directions of the Clarks Ferry Bridge.More >>
One person was flown to the hospital this morning and another taken by ambulance after a multiple vehicle accident on Route 22/322.More >>
Sunday, June 16 2013 4:32 PM EDT2013-06-16 20:32:52 GMT
The westbound lanes of the Pennsylvania Turnpike are closed near the Susquehanna River Bridge due to a multi-vehicle crash.Authorities said there are traffic incidents near mile markers 241.9 and 247.4.TheMore >>
The westbound lanes of the Pennsylvania Turnpike have reopened following a multi-vehicle crash at the Susquehanna River Bridge in Dauphin County.More >>