An estimated 1.5 million Americans suffer from Lupus. It's an autoimmune disease that's difficult to diagnose because symptoms mimic those of other illnesses. There's no cure and those who are affected by it, whether it be the person suffering from Lupus or the families who care for them, it's common to have more questions than answers about the potentially life-threatening condition.
"I was very tired all the time and just very weak. You don't feel like coming out of bed. It's one of those things where you feel like you ran a marathon and basically you don't want to get up and your joints hurt," Rene Chandool said.
For Rene, living with Lupus is a struggle. She experiences fatigue that doesn't go away with rest, joint pain, stiffness and swelling and rashes after sun exposure. Her immune system doesn't work correctly. A healthy immune system protects the body by sending antibodies to attack invaders such as viruses and bacteria. In Lupus, those antibodies attack healthy tissue, causing inflammation in the joints and other parts of the body.
"You know when something is coming. You know when you're about to feel pain. You know when you're about to not feel good. You know if you don't sleep you're going to be much weaker than a normal person would from not sleeping," Rene said.
Her mother, Roma, had to recognize Rene's symptoms and struggles too. She found the best way to learn as much as she can about the disease is to share information, experiences and research with other people. Roma started the Grand Strand Lupus Support Group to exchange information with other families.
"They have all the learning materials and general support. Learning to live and cope with Lupus. They can learn more and gain knowledge even if they don't have the same symptoms as everyone else," Roma said.
There is no single lab test that can show if someone has Lupus. Doctors look at a combination of factors including medical history, signs and symptoms and lab tests. And while there's no cure, a second set of eyes and ears at a doctor's appointment can help. And Roma believes the smallest bits and pieces of information exchanged through Lupus families will make a difference.
You can learn more about the Grand Strand Lupus Support Group by visiting their Facebook page.
