Sept. 3, 2023

Unraveling the Mystery of Sarcoidosis: One Woman's Journey

Sarcoidosis is a perplexing inflammatory disease that can strike any organ in the body. On a recent Medical Maze podcast, Terri shared her frustrating journey to getting diagnosed and learning to manage this unpredictable condition.

What is Sarcoidosis?

Sarcoidosis involves tiny inflammatory cell clumps called granulomas that form in various tissues and organs. It can affect the lungs, lymph nodes, skin, eyes, heart, brain, and other areas of the body. Symptoms depend on where the granulomas develop and can include coughing, skin issues, fatigue, joint pain, and much more.

While the exact cause remains unknown, it appears tied to an overreaction of the immune system. Unfortunately no cure exists for sarcoidosis yet.

The Long Road to Answers

Terri suffered confusing respiratory symptoms and extreme fatigue for years. One day at work she suddenly couldn’t catch her breath and had to go to the ER.

X-rays revealed spots on her lungs that doctors feared was leukemia. She underwent grueling testing, including a lung biopsy, before finally being diagnosed with sarcoidosis in 2016.

Terri later realized she’d likely battled this disease for decades based on past issues like heart problems, vision loss, and skin lesions. Sarcoidosis had disrupted her life all along, masquerading as other conditions.

Managing a Chameleon Condition

With sarcoidosis, Terri describes each day as unpredictable. She never knows when a flare of symptoms may hit, making life feel like a rollercoaster. She takes multiple medications to control inflammation and prevent disease progression.

Terri also sees many specialists to monitor her lungs, skin, heart, liver, and overall health. Frequent testing helps quickly address any emerging complications. But the treatment regimen is grueling along with the illness itself.

Because no two sarcoidosis cases are alike, Terri’s experience highlights the need for greater awareness. Her story illustrates the confusing nature of this stealthy disease and long journey many face to diagnosis and care.

Watch Terri's Episode HERE

#Sarcoidosis #AutoimmuneDisease #RareDisease #MedicalMaze #Podcast

Don-Ellen Ray

Host

Don-Ellen Ray, an extraordinary single mother who has charted a path from the corporate world to becoming a beacon of hope and knowledge. Her personal journey through the twists and turns of misdiagnosis led her to the discovery of a life-altering condition: Lipedema.

Don-Ellen's relentless pursuit of answers began when she experienced excruciating leg pain, accompanied by an unsettling transformation in their appearance. Her legs seemed more like stumps, and unexplained bruising dotted her skin. Overwhelmed by chronic fatigue, even the simplest daily tasks became a Herculean effort. It was during her extensive search for answers that she unraveled the enigma of Lipedema.

Driven by the realization that others must be enduring similar struggles, Don-Ellen's vision for this podcast was born. With unwavering determination, she aims to share her own journey while amplifying the stories of countless individuals who have faced misdiagnosis and rare conditions. This platform will serve as an invaluable resource, providing education, information, and much-needed awareness about Lipedema and other misunderstood and rare conditions.

Don-Ellen's mission transcends mere awareness. She seeks to create unity, a space where those walking a similar path can find solace, support, and companionship. Together, we will embark on a transformative journey of information, compassion, and unwavering solidarity.

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