By Stacy Sneed
Nearly a decade after first writing “Sarcoidosis Doesn’t Have to Be a Death Sentence,” I now understand that the truth is far more complex—but still rooted in hope.
When I think about sarcoidosis in 2026, I realize how far we have come in awareness, knowledge and medical advancement. Technology has improved, and we understand more than we did years ago. However, it is still considered a mystery disease. We still do not fully know what causes sarcoidosis, and it has not received the same level of recognition or urgency as other chronic illnesses such as cancer or lupus.
Sarcoidosis is a chronic inflammatory disease that can affect multiple organs in the body, including the lungs, skin, eyes, heart and lymph nodes. It impacts individuals of all races and ethnicities, though it continues to disproportionately affect African American communities in both severity and long-term complications.
What I did not fully understand in 2017 is how complex the journey truly is—not just medically, but emotionally, financially and socially.
When I first shared my story, I spoke from survival. I described physical pain, frightening symptoms, and the fear of not knowing what was happening to my body. At that time, my message was simple: there is hope.
Today, my message is still rooted in hope—but it is also grounded in reality.
Living with sarcoidosis is lifelong management. It is learning your body again and again as symptoms shift, improve or return. It is also navigating a healthcare system where patients often feel unheard or dismissed.
Many patients still struggle to find doctors who truly listen and understand their symptoms. Diagnosis can be delayed, and individuals are sometimes misdiagnosed before receiving answers.
Medication access is another challenge. Will insurance cover treatment? And what happens when a person does not have insurance? What options are available when treatment becomes out of reach, and how does someone continue care when access is limited by cost? These uncertainties create stress and anxiety that can worsen symptoms and flare-ups.
In order to have a better quality of life, I was placed on a medication called Remicade, a biologic infusion therapy used for severe autoimmune and inflammatory conditions. It required hours of IV infusion and close medical supervision. However, it was the only treatment that helped me regain stability and improve my quality of life.
That experience connects back to my earlier commentary, “Sarcoidosis Doesn’t Have to Be a Death Sentence.” I still stand by what I wrote then. At the time, I spoke about survival, hope, and the reality of living with sarcoidosis. Today, I understand those same experiences on a deeper level.
Access to treatment is not equal for everyone. Many patients can only receive this level of care if insurance covers it, and even then, the financial burden can be overwhelming.
But what happens to those who cannot tolerate treatments like Remicade or whose bodies do not respond? Many are forced to try multiple medications in search of stability.
Sarcoidosis remains unpredictable. Symptoms can shift without warning, and in some cases, the disease may go into remission for long periods.
Some treatments can also come with significant side effects. In my personal experience, medications such as Prednisone caused major migraines that I still struggle with today, along with noticeable weight gain and increased appetite. These side effects added another layer of challenge to an already complex journey.
I share this not to discourage treatment, but to highlight the importance of individualized care and close medical support.
Like many things in life, there is always a battle to fight. With sarcoidosis, the fight is ongoing every day. It requires strength, patience and resilience.
Lifestyle changes such as healthier eating, exercise, and stress management can support overall well-being. In my experience, making adjustments to my diet and staying active helped me feel stronger and more balanced alongside medication.
When I reflect on my original 2017 commentary, “Sarcoidosis Doesn’t Have to Be a Death Sentence,” I still stand by what I wrote then. At the time, I spoke about survival, hope and the reality of living with sarcoidosis. Today, I understand those same experiences on a deeper level.
My hope is that awareness continues to grow so patients receive earlier diagnoses, better treatment options, and more compassionate care. No one should have to navigate this journey alone.
Sarcoidosis may still be a mystery in many ways, but the people living with it are not. We deserve understanding, care and hope.
The opinions expressed in this commentary are those of the writer and not necessarily those of the AFRO.