Faces of Rare Disease: Sarcoidosis

Faces of Rare Disease: Sarcoidosis
Updated: May. 10, 2012 at 6:29 AM CDT
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Our body's immune system is supposed to protect us from infection and disease, but there is a condition called "sarcoidosis" that actually causes a person's immune system to damage its own tissues.

In this "Faces of Rare Disease," Sabrina Sonnier talks about this diagnosis that could threaten every organ in her body.

Sabrina is surrounded by medical information and doctors every day.  This cardiology secretary at Lake Charles Memorial Hospital helps other patients every day and never imagined that she would become a patient herself with a mysterious disease.  "It started about nine months ago with a huge and hard swollen area on my arm and it also had fever," said Sabrina.

When Sabrina noticed that the irritated area was not improving, she knew it was time to see a doctor.  "I saw my internal medicine physician and then she referred me to a rheumatologist," said Sabrina, "she wanted me to see a general surgeon and a dermatologist and he recommended me to see a pulmonologist."

That chain of events included five doctors and a diagnosis Sabrina had never heard of.  "The doctor had mentioned the word 'sarcoidosis,' but I never heard it," said Sabrina, "so I didn't know what she said."

Sarcoidosis is an inflammatory disease that causes tiny clumps of abnormal tissue known as granulomas, to form in organs throughout the body.  Memorial Medical Group pulmonologist, Dr. Manley Jordan, says, "It can affect multiple organs, but the most common organs affected are the lungs, the skin, the lymph nodes and the eyes."

The cause for this disease is unknown and it typically starts in adults after age 20. While mild cases only involve moderate treatments, like anti-inflammatory medicines, Sabrina knows the reality of the more involved cases can be life-threatening.  "It can be fatal," she said, "and that was scary for me to accept that I have this disease and what it can end up being."

Sabrina knows of seven other people in Southwest Louisiana living with the same unanswered questions, but statistics show that there are more looking for the same answers that will help them lead longer, healthier lives.

When Sabrina didn't know where to turn for support, you took matters into her own hands, starting the first and only sarcoidosis support group.  "I've gotten calls from family members that lost a loved one and that's what they saw on the death certificate is 'sarcoidosis,'" said Sabrina.

Sarcoidosis is something that Sabrina will live with for the rest of her life, but she says the discouraging diagnosis in the beginning has brought her to where she is now - in a place where she can encourage others facing the same struggles.  "At one point I may have felt hopeless," said Sabrina, "but now that the support group is going, it's like a little family and it's nice to have that."

It is hard to pinpoint exactly how many people have the disease, because some people do not show symptoms. A chest x-ray or biopsy is needed for a diagnosis.

If you are interested in attending the Southwest Louisiana Sarcoidosis Support Group, it is held the first Tuesday of every month from 6:00-7:00 p.m. at LCMH's Shearman Conference Room.

Copyright KPLC 2012.  All rights reserved.