“I was diagnosed with Cutaneous Sarcoidosis in July of 2011. When I was diagnosed, I was alone and didn’t know what this disease was much less how to pronounce it correctly, which I’m still working on. Ha.
After Googling Sarcoidosis, I was a tad bit scared; I did further research and found the Foundation for Sarcoidosis Research (FSR). Upon contacting them, they sent me some information and resources. During my search, I found a support group in Baton Rouge, The Sarcoidosis Awareness Support Group of Greater Baton Rouge. I was able to contact another Sarcoidosis patient, who provided me with the hours and location of his support group. I drove over two hours to go to the support group; that is when I realized it’s time to start one close to my home in Lake Charles.
I was eager to figure out how to start my own support group, and reached out to a co-worker/friend to see if she could guide me in the right direction. During this time, I was transforming to a new position at work. I had so many thoughts going through my head: What am I going to do? How will I do in this new position? Will I live with this disease? What kind of support can I get?
After finally getting the courage to reach out to a Pulmonologist and my employer’s marketing department, I was able to put together the SWLA Sarcoidosis Support Group with help and guidelines from FSR. In March 2012, I was video interviewed by KPLC 7 News, Lake Charles, Louisiana, during February’s Rare Disease Month and had the opportunity to talk about Sarcoidosis and the support group. After that aired, I received several telephone calls and had my first support group meeting in April 2012, which was exciting as April is also Sarcoidosis Awareness Month. During our first meeting we had the pleasure of listening to a pulmonologist specialist speak about Sarcoidosis. I believe we had about 30 people attend the first meeting. I was so impressed with the outcome.
During this time of the support group, I had three successful Sarcoidosis Awareness Balloon Releases and three Sarcoidosis Awareness Walks/Runs. On occasion, we were able to hold some bake sales to help with the proceeds to put the Walk/Run together.
In 2014, I became a Patient Ambassador with FSR. During my time volunteering, I was able to meet an extraordinary group of other volunteers and staff members of FSR. I truly enjoyed the in-person training. Upon COVID-19, I was excited to learn we could still train with FSR via Zoom.
At my support group meetings, a host of professional speakers attended and provided education. The speakers included a licensed nutritionist to help us learn about the right foods to eat for the inflammation, a licensed therapist to help us cope with the disease, a licensed exercise specialist, a Pulmonologist specialist, a Cardiovascular Thoracic Surgeon and a Respiratory Therapist.
Being a volunteer helped me understand the disease better and receive information I could bring back to my community. I wasn’t sure if I could be responsible for a support group and raising awareness for Sarcoidosis all while I worked two jobs. Somehow, it all worked out great over the past 12 years.
On October 17, 2024, I will have a booth at the Women’s Commission of Southwest Louisiana-Lake Charles, LA to share information regarding Sarcoidosis and the Foundation for Sarcoidosis Research. There are usually over 2,000 people that attend this lovely event. I look forward to being a part of this.
I cannot thank the community, my family and friends enough for their support over these years.”
– Sabrina Sonnier
FSR would like to extend our deepest gratitude to Sabrina Sonnier for 12 incredible years of dedication, volunteerism, and leadership. As the founder of the SWLA Sarcoidosis Support Group and a devoted FSR Patient Advocate, Sabrina has made a lasting impact on the sarcoidosis community and beyond. Her efforts have provided vital support, awareness, and education for those affected by sarcoidosis. FSR is proud to have been a part of this journey, and we are thankful for her commitment over the years.
To learn how to get involved with volunteerism, click here.
Sabrina was diagnosed with Cutaneous Sarcoidosis in July 2011 and quickly became a passionate advocate for those living with the disease. After discovering the Foundation for Sarcoidosis Research (FSR) and attending a local support group, she was inspired to establish her own community for sarcoidosis patients in Lake Charles, Louisiana. In 2012, she founded the SWLA Sarcoidosis Support Group, which has since provided education, support, and resources to patients and their families.
Sabrina’s leadership and tireless dedication led to multiple successful awareness events, including Sarcoidosis Awareness Walk/Runs and balloon releases. She also organized community fundraisers, such as bake sales, to further support the cause. In 2014, Sabrina became an FSR Patient Ambassador, where she continued to make a significant impact through in-person and virtual training programs.
Over the past 12 years, Sabrina has brought valuable education to her community by hosting professional speakers, including pulmonologists, nutritionists, and therapists, to share insights on managing sarcoidosis. She remains a committed advocate and continues to raise awareness about the disease at various community events.