Remaining hopeful
Williams is now 52 years old. She has been on oxygen for the last seven years, and has had to stop working. But, she is now on a regimen that works well for her. She volunteers and remains positive.
“I think of things I can do, and not about what I can’t,” Williams says, about how she copes. “I come up with new ways to do things I really want to do.”
Seven years ago, she was able to keep her vacation plans to Jamaica, despite being newly ordered to wear oxygen. She found a portable oxygen machine that she could take on the flight and, with the help of her friends, she participated in activities and had a great time.
Williams is also a patient ambassador for sarcoidosis. With the help of the Foundation for Sarcoidosis Research, she started a local support group in Ann Arbor, Mich., providing education and emotional support to sarcoidosis patients, their families and their friends. She was also instrumental in the State of Michigan issuing a Proclamation for April as Sarcoidosis Awareness Month.
But, Williams is not done.
“I would like to see doctors get more educated about the disease,” she says, “a disease that has been around for over 100 years and with more people being affected [by sarcoidosis].”
Crouser is hopeful: “Over the past 10 years, I have witnessed growing momentum in the field and I am hopeful this momentum will continue to build.”
Caudle reminds other patients to also remain positive.
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“It’s not the end of the world,” she says. “It is a condition that can be managed very well. People can live very healthy and happy lives with sarcoidosis. The first step is getting diagnosed.”
Dr. Tyeese L. Gaines is a physician-journalist with nearly 15 years of print, online and broadcast experience. She is a practicing emergency medicine physician based in New Jersey and owner/media strategist for Doctor Ty Media, LLC. Follow her on twitter at @doctorty.
