Category: Patient Voices
DENIED: How to Manage the Emotional Ups and Downs of Battling your Insurance
“The Actemra has been denied. We will start the appeals process.” These two sentences glare at me from the patient portal message center. I feel exposed and vulnerable. Here we go again. My doctor says I need this medication, but my insurance is saying “NO.”I was...
Being an Engaged Patient: Staying Up-to-Date on Research
In 2014, I was diagnosed with sarcoidosis during an unrelated ER visit for an auto accident. I had a chest x-ray to rule out a fracture from the seat belt, and unbeknownst to me, I had hilar and mediastinal lymphadenopathy. My journey with sarcoidosis began that...
7 Questions for a New Medication
Doctor’s visits while dealing with sarcoidosis can feel overwhelming. Sarcoidosis patients often have a lot of symptoms, medications, doctors, and other things to juggle. When you get to the doctor, it sometimes feels like there is not enough time to cover...
Life as a Sarc Warrior: Making Our Medical System Work for You
Life with sarcoidosis can be hard. This is why we reached out to you, our patients, for advice on how to deal with our medical system.
Life as a Sarc Warrior: Quality of Life
Life with sarcoidosis can be hard. This is why we reached out to you, our patients, for advice on living a healthier lifestyle.
A Sarc Warrior’s Perspective on Pulmonary Rehabilitation
Many sarcoidosis patients struggle with lung function which can make exercise seem impossible. Programs like Pulmonary Rehabilitation help patients with lung diseases improve lung function, reduce symptoms, and improve quality of life.
Life as a Sarc Warrior: Dealing with Financial Concerns
Life with sarcoidosis can be hard. This is why we reached out to you, our patients, to better understand the financial hardships that come with sarcoidosis.
50 States, 5,000 Miles, $50,000: Cycling Against Sarcoidosis
The husband of a sarc warrior is planning an ambitious fundraiser, cycling 5,000 miles to raise $50,000 for sarcoidosis research.
Life as a Sarc Warrior: Advice on Friends and Family
Life with sarcoidosis can be hard and no one knows that better than our patients. This is why we reached out to you, our patients, for advice.