RICHMOND (WRIC) – 8News is taking the lead to bring awareness about sickle cell disease. It's an inherited blood disorder that affects 4,000 people in Virginia.
Yet many of them suffer in silence because of various stigmas. 8News anchor Amie McLain explores some of them and tells us where support is available.
With all these pictures on her wall, you can tell family means a lot to Bridget Wilson — and for her, a good support system starts at home.
When her twin boys Brendon and Bryant were born with sickle cell disease — she became their number one advocate.
For the past 25 years, she's been right at their side through hospital visits, health scares and horrific pain.
“One of the twins told me that he felt like he wanted to die because the pain was so intense,” she says. “So as a mother that breaks your heart because there's nothing you can do but try to help them cope with the pain.”
Ironically, one big stigma is that sickle cell patients don't experience much pain.
“They really think when they come into the hospital and they're in a pain crisis that they are drug seekers.”
For that reason, many patients receive smaller doses of the pain medicine they're prescribed or their complaints aren't taken seriously.
Wilson's son, Brendon dealt with that scenario last year when he went to the hospital after suffering a stroke.
Another big stigma tied to sickle cell disease is that patients can't enjoy life.
When Brendon and Bryant begged to play football as kids, mom decided to side-step the doctor's suggestion and let them take the field.
“I knew that they were not the best athletics but they really wanted to play, so I advocated for them to play football even though they were on the sidelines,” she says. “They were on the team and that was very important for them.”
At 68 years old, George Carter, is debunking the stigma that sickle cell patients can't live a long enjoyable life. Years ago, he was told he should never get on a plane.
“Once upon a time I couldn't fly anywhere. Now I've flown to China, Europe…”
Carter manages the Sickle Cell Association of Richmond known as OSCAR. The group is working to defeat these stigmas and provide a support network for families like Wilson's.
“We also bring in speakers to talk about things like pain management, stress management and good nutrition.”
When it comes to sickle cell disease, awareness and education made all the difference for Wilson and her family.
“Hopefully we'll get the word out and people will be very knowledgeable about sickle cell disease,” she says.
The Sickle Cell Association of Richmond Support Group meets the third Thursday of the Month. People Gather from 6 to 8 p.m. at VCU Medical Center behind the cafeteria on the first floor. For more information, call (804) 321-3311.
The group is gearing up for a big fundraiser in may called the Unity Ride and each month until then Amie McLain will spotlight a certain aspect of sickle cell disease.
The FDA is hosting a special meeting with sickle cell patients to learn more about which treatment options work best. It's happening February 7 in Silver Spring, Maryland, but you must register by Monday. Click her for more information: patientfocusedsicklecell.eventbrite.com
Copyright 2014 by Young Broadcasting of Richmond