There are only 200 registered cases of Erdheim-Chester Disease in the world today. It is the disease that took the life of Gary Brewer, of DeRidder, six years ago. Even in his death, his wife is fighting for others to live.
Fond memories of their years together keep Kathy Brewer smiling about her late husband, Gary. "He was the perfect match for me," she said, "he made me want to be better than who I thought I was."
When the couple married in 1998, Gary was Superintendent of Schools for Beauregard Parish - active and healthy - other than some nagging kidney problems. "He started complaining about pain in his knees, pain in his lower back." said Kathy, "We went to doctors and tried to understand it, the kidney issues started cropping up a little worse."
Doctors blamed the pain on aging, but more symptoms developed. "He began just feeling very fatigued, tired, being nauseous, being light-headed, numbness in his face," said Kathy.
Congestive heart failure and kidney failure in 2004 left the Brewers with the best option doctors could present: kidney transplant. Gary's only son, Gary, volunteered. "We wanted the cure," he said, "we thought that was going to be the end result, that we were going to have our dad back. Kathy was going to have her husband back."
But in the three years following the transplant, Gary's health went downhill. He could hardly speak, swallow or walk. "It is a very lonely experience, very frustrating," said Kathy, "we would go and see doctors and the doctors would look at me and say, 'What do you want me to do?'"
Still, Gary fought hard doing physical therapy almost every day. Kathy had her own fight: pressing doctors across the country to look at the pages of medical records she kept, acting as a well trained nurse on a mission. "I promised my husband that we would find out what was causing him to be ill and we would fight it and that is a commitment I am honoring," said Kathy.
An autopsy finally gave the Brewers the answer they had searched years to find. The diagnosis: Erdheim-Chester Disease, a puzzliultra raretrarare disease affecting all major organs of the body. "You realize very quickly that you have two choices," said Kathy, "you can be angry and sad or you can do something to help people in the future."
Kathy decided to help, creating the Erdheim-Chester Disease Global Alliance. It raises awareness, research dollars and connects people globally, like Charles Balnaves of Australia, whose wife Tanya died of ECD last year. "It allows me to bring some fullness to some of the things that have been happening for years now with Tanya's getting sick and death," he said, "it just feels wonderful."
It is those moments of hope and human spirit that keep Kathy pushing forward with the dream of a cure. "Once I've met all of the patients and the doctors, it's impossible to walk away," said Kathy.
ECD presents differently in each person because it can affect the heart, lungs, kidneys, bones, eyes or brain. A diagnosis only comes when a doctor performs a bone scan, pathology report and notes the patient's symptoms.
To learn more about the disease and connect with the ECD Global Alliance, click here.
Kathy and her team just hosted the world's first medical symposium on ECD in San Diego last month.
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