She’s done a lot of research since her diagnosis, and Misty Bailey says the heart condition she deals with daily affects 60 out of every 100,000 people in the U.S. That makes cardiac sarcoidosis relatively uncommon. There’s no quick fix, but there are treatments that can help make patients like Bailey feel better. Not well, but better.
Bailey takes upwards of two dozen pills each day and sees a team of doctors to manage her condition and the side effects of medication and the toll all of this takes on her body. She and her husband call those specialists “-ologists.” There’s the endocrinologist, the ophthalmologist, the neurologist, and, of course, the cardiologist, to name just a few.
All this care takes time – and money. And that’s where the “Fight for Misty” team kicks in. A barbecue fundraiser will be held on Saturday, Oct. 2 at Bailey’s church, Harriet Baptist Church, located at 1354 Ruin Creek Road. Pickup is from 1 p.m. to 5 p.m.
The Baileys, along with Amy Bowling, were on Town Talk Wednesday to talk about the fundraiser and to increase awareness of the disease, which is described as a chronic inflammatory condition, which has no cure.
The barbecue is $10 per pound. There also are t-shirts, stainless steel tumblers and silicone wrist bands – all emblazoned with “Fight for Misty” – available for purchase. Tickets are available before the event, but drive-ups are welcome.
Bailey said she is humbled and honored to feel the support of people, some of which she doesn’t even know. When she sees folks wearing “her” t-shirt, it evokes emotions of appreciation and gratitude. It also keeps her motivated as she learns to live with a chronic health condition.
“They’re spreading awareness and they don’t know me personally – they want to support me (and) they want to help people that need the help,” Bailey said.
“Even for those who I don’t know that have supported me through t-shirt sales, BBQ, and donations, you all have made me feel special. I can’t tell you thank you enough and how much your support means to me,” she said.
In April, Bailey had a port placed so she could receive infusions every six weeks to reduce the inflammation around her heart. Her rheumatologist said this could continue for several years. Sometime within the next five years, she said “Afib will start showing itself,” so that will have to be dealt with. Afib refers to arrhythmia, when the heart doesn’t pump and beat in proper rhythm.
Dealing with all the side effects takes its toll, she said.
“The hardest part of this heart disease is when I am laughing and having a great time,” Bailey said. “Some people start to think, ‘She looks absolutely fine there. It doesn’t seem like she is in any kind of pain. In fact, she is going out having fun!’”
But, she said, she wants to reply, “Did you know that I had to save my energy all week long just to go out that one night?”
As she continues to manage the daily challenges she faces, Bailey said she feels like she is called to be a voice for this disease. “As long as I have the strength to do so, that’s what I will be doing,” she added.
“A lot of people don’t even realize they have cardiac sarcoidosis until it’s too late,” she continued.
“And I was almost that person.”
Click Play to hear Misty