My name is Kristen, and I am a sister, daughter, aunt, and friend. Additionally, I am a person living with a rare disease called sarcoidosis, often referred to as an invisible illness. I serve as a Foundation for Sarcoidosis Research (FSR) Global Sarcoidosis Clinic Alliance Volunteer Community Outreach Leader at Northwestern Medicine Canning Thoracic Institute. FSR is the leading international nonprofit organization dedicated to finding a cure and improving care for sarcoidosis patients through education, awareness, advocacy, and elevating sarcoidosis research.
Many people struggle with pronouncing "sarcoidosis," and this difficulty hinders awareness efforts, educational initiatives, and discussions with healthcare professionals, impeding a comprehensive understanding of the disease's impact.
To address these challenges, we must increase visibility and awareness, particularly during Sarcoidosis Awareness Month in April.
Allow me to share a glimpse of my journey living with sarcoidosis. My official diagnosis and treatment began in March 2022, following two years of declining health, misdiagnoses, and a lack of coordination among my healthcare providers. I was frightened and frustrated as every proposed treatment failed to alleviate my symptoms. I was feeling increasingly worse instead of better.
Sarcoidosis affects each patient uniquely. In my case, inflammation primarily affects my spine and optic nerve. While I don't have ocular sarcoidosis, my vision often suffers during flare-ups, and inflammation in my spinal cord affects my mobility and balance, necessitating the use of a walker for daily activities to prevent fall-related injuries.
Upon receiving the sarcoidosis diagnosis after a 10-day hospital stay filled with various tests, I initially felt relief. Finally, a name for what I was experiencing! However, this relief was short-lived as I grappled with the mental health and other ramifications of living with a rare disease that few understand. Despite outward appearances, the fatigue, pain, and frustration of managing a disease with limited treatment options take a toll on both my physical and mental well-being. While I maintain hope for a brighter future, it's challenging to envision amidst the current struggles.
What do you need to understand about sarcoidosis, and how can you help?
Understand this: While sarcoidosis wasn't on my bucket list of things to experience before turning 50, I consider myself fortunate. I receive care from Northwestern Medicine, one of the premier healthcare institutions in the US. Proximity to their facilities minimizes the burden of appointments and tests. My providers demonstrate care, thoroughness, and coordination, contributing significantly to my treatment journey.
Additionally, I am grateful for my career with a supportive company that provides flexibility to balance work and health needs. The associated health insurance benefits mitigate many challenges in accessing treatment options. My career has also provided insights into healthcare disparities, fueling my advocacy for improved care for vulnerable populations, including sarcoidosis patients.
Sarcoidosis, pronounced SAR-COY-DOE-SIS, manifests as inflammatory granulomas in one or more organs, presenting diagnostic challenges with limited treatment options and no known cure. Approximately 175,000 people in the United States live with sarcoidosis, with Black and African Americans disproportionately affected, experiencing more severe forms of the disease and worse health outcomes.
Here are some ways you can contribute:
- Donate to support sarcoidosis research and patient advocacy.
- Educate yourself about sarcoidosis to raise awareness and understanding.
- Attend upcoming events to support the sarcoidosis community.
- Visit www.stopsarcoidosis.org to learn more and get involved.
Together, we can amplify awareness, support, and research efforts to improve the lives of sarcoidosis patients worldwide.
