Walk to fight, spread awareness of Sarcoidosis in Bellaire this weekend
BELLAIRE, Texas - Do you know what Sarcoidosis is? A Houston-area mom didn't, until her beloved daughter passed away from it 20 years ago.
Emma Carroll has spent all these years running a foundation in her daughter's name to raise awareness through Janine's Sarcoidosis Outreach Foundation. "My daughter became ill, and we had no idea what her illness was, but when she finally got a diagnosis on a Monday, she died the next Monday at 31-years-old from a disease that we were told was sarcoidosis, something we had never heard of.
Emma could find little information about it, and ended up sharing her research with others and turning it into an international awareness campaign.
Sarcoidosis is a disease that causes small collections of inflammatory cells, called granulomas, to grow in the body.
"When these clumps or swelling go unnoticed for a long time, it causes organ dysfunction," explains Dr. Guatam Sikka, a pulmonologist with UTHealth Houston and UT Physicians. "Sometimes actually, it's irreversible, and it affects the kidneys, lungs, heart, even the brain and the spinal cord, the skin, and eyes."
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He calls it the disease with a hyperactive immune system that causes clumps of inflammation throughout the body. He actually chose to move to Houston so that he could work in the comprehensive Sarcoidosis Clinic at UTHealth.
"The clinic initially opened about two to three years ago, but in the last year, we've actually made a lot of progress," explains Dr. Sikka. He says they're also offering effective treatments with fewer side effects now. "We have a multidisciplinary group of doctors! We come together every month to talk about challenging cases."
"We have doctors who take care of sarcoidosis in the brain," he adds. "We have ones who take care of sarcoidosis in the lungs, the liver, we also have a bone metabolism clinic that helps us with patients who have bone erosion secondary to corticosteroids."
Emma is thankful that Houston has this clinic and that it will help save others the fate her own daughter suffered. Jacqueline Lewis says she never knows how the complicated disease will affect her from day to day.
We also talked to sarcoidosis patients Myra Lovelace, who was diagnosed with sarcoidosis in 2008, and Sharon Bankett, diagnosed in 2017. They agree with Jacqueline that it can be a tricky disease.
"Right now, it's affecting my eyes. It creates pain," explains Jacqueline. "You can feel the vessels swelling from the inflammation. So, it alters life! If it's affecting the lungs, you're not breathing good. I have challenges with it attacking my skin and that means I can't be outside in the heat because the skin gets sunburned, so whatever organ it's attacking, is how it's going to affect our life and what we can and can't do."
She is not Dr. Sikka's patient but she is thrilled with what he's doing at the sarcoidosis clinic.
"I am so hopeful; we are so hopeful≠," says Jacqueline. One of the things I always say in my story is my mother was diagnosed with it, but it was too late for her diagnosis, so I don't want my daughter or my granddaughter to go through this and not have a cure for it. So, every day I'm excited and hopeful and praying for this clinic and getting the word out, and I want everybody to know about sarcoidosis."
There is no cure for sarcoidosis and patients are often treated with steroids and chemotherapy. Clinical trials are underway to help lead the way to better treatments.
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A fundraiser to bring awareness about Sarcoidosis is taking place Saturday, April 29, plus a clinic in Houston is helping treat patients like never before.
"Janine's Sarcoidosis Outreach Foundation" invites you to join them in Bellaire to raise funds and awareness about sarcoidosis. It starts at Bellaire City Hall and doctors and researchers from around the country will be there sharing vital information.
You'll find purple lights throughout the Texas Medical Center this weekend, honoring the awareness campaign. To register, click here.