Michael Miller/Telegram
Lupus is a puzzling disease and survivors can play a role in putting the puzzle together.
Lakeisha John of Killeen watched the disease ravage her mother, Deborah Richardson, who died of complications of the disease in March 2015.
“To solve this we need to do our part to spread awareness,” John said. “I don’t know personally what they are going through, but as a witness it breaks my heart.”
John said her mother’s life signified hope, as do Joyce Dukes and Lisa Smith, who both have lupus and are organizing the upcoming lupus walk.
All have a vested interest in bringing more attention to a disease that is difficult to diagnose and difficult to live with and they are all involved in the planning of this week’s Walk To End Lupus Now, set for 10 a.m. Saturday in downtown Temple, Third and Adams.
It’s the local lupus patients who put on the walk that typically draws several hundred people.
“It’s hard work, but we do it,” Dukes said. “In order for us to live a fulfilling life we have to find a cure and it’s been a long time since a new drug to treat lupus has been introduced.”
Lupus is a chronic autoimmune disease that can damage any part of the body — skin, joints, organs, eyes.
In lupus, something goes wrong with the immune system, which is the part of the body that fights off viruses, bacteria, and germs — “foreign invaders,” like the flu. Normally the immune system produces proteins called antibodies that protect the body from these invaders.
Autoimmune means the immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.
Richardson had lupus for more than 15 years. She died of pneumonia and sepsis.
Dukes has had lupus since 1993, but wasn’t officially diagnosed until 2003. She had the symptoms, but each time she went to the doctor the tests came back negative.
“It is a vicious circle,” she said.
A diagnosis requires that many of the symptoms be active at the same time and it can take years before a conclusive finding is reached, Dukes said.
A painful elbow is a visit to the orthopedist, a kidney issue results in an appointment in nephrology.
“You’re seeing all these specialists who don’t communicate with each other and there’s nobody piecing it together,” Smith said.
“That’s an ongoing story for most people with lupus,” she said.
Dukes said she has been diagnosed with fibromyalgia, arthritis, a pulled muscle, hypochondria and everything in between.
Smith received her lupus diagnosis 15 years ago. The disease attacked her central nervous system, making it difficult for her to walk. Smith uses a wheelchair so her strength isn’t sapped as quickly.
Smith also appears flushed, with reddened skin across her cheeks and on the bridge of her nose, the butterfly rash seen in many lupus patients.
“Everybody is a little bit different,” she said. “If I’m out in the sun I’ll get rashes all over my legs and places not even exposed to the sun.”
Dukes has had the rash on her scalp and lost her hair in the process.
Smith has a sister with lupus and they are dealing with different manifestations of the disease. Her sister has problems with her eyes. Lupus has damaged Dukes’ kidneys and it was a kidney biopsy that finally confirmed her diagnosis.
Some medications lupus patients take to protect an organ can harm others.
Because of compromised immune systems lupus patients have to be diligent in avoiding people who are sick. Masks are worn to doctor appointments.
Dukes was told to avoid children during cold season.
“I have grandchildren,” she said. “They’re little germ factories.”
Cold weather bothers Smith, while heat is Dukes’ nemesis.
Dukes uses a cane, but she doesn’t like it. She lives alone and likes her independence, but some of that was lost when she could no longer drive.
Planning ahead for activities is a must, she said. Over do it and the next day getting out of bed may be impossible.
Smith met Dukes at a lupus walk and they met John when she showed up at a lupus support group meeting. The three are relatively new friends.
“The thing about lupus is that when you think you’re experiencing the worse, you know in a year those bad days will be a fond memory,” Smith said. “It’s always evolving, with more dragons to slay.”
There are overlapping diseases and when there is a flare — unpredictable and debilitating bouts of symptoms — it’s not easy to know whether it’s related to lupus, rheumatoid arthritis or fibromyalgia.
John’s mother was diagnosed with bi-polar disorder when she was experiencing lupus fog, cognitive problems brought about by lupus.
“Some physicians aren’t aware of this,” she said.
Smith has two teenagers at home and a child in college and there is still much she wants to see and do.
“I have lupus; it doesn’t have me,” Smith said.
Dukes said she knew she was strong and lupus has bolstered that belief.
Dukes likes to cook and she particularly enjoys making holiday meals for her family. It will wear her out and she might end up in bed when everyone else is sitting around the dining table, but it’s what she wants to do and she doesn’t want anyone to take that away from her.
“I have to take life as it comes and enjoy it each and every day,” Dukes said.
IF YOU GO
The Walk To End Lupus Now event will take place 10 a.m. Saturday at Third Street and Adams Avenue in Temple. Check in begins at 8 a.m. To form a team or be a sponsor, call 498-374-0590 or 1-866-205-2369. Or visit, walktoend lupusnowtemple.org
Bringing awareness about lupus. Lisa Smith, who is living with lupus, speaks about the disease recently at her home in Temple. Smith is helping organize a lupus walk with the goal of bringing more attention to the disease.
By: Janice Gibbs | TELEGRAM STAFF
May 14, 2016 | 3:19 pm
.jpg)
0 Comentarios