Since he was a kid, Frank had been an athlete and avid runner. One day, just ¾ of a mile into his daily 5-10 mile route, he couldn’t catch his breath, “I thought I was having a heart attack,” he remembers. He was rushed to the hospital where a CT scan showed many masses in his lungs. A misread biopsy led the doctors to diagnose him with lung cancer, but the problem was actually something rarer.
Frank was suffering from sarcoidosis; an inflammatory disease that causes the immune system to overreact. This results in the formation of clusters of inflamed tissue called "granulomas" in one or more organs of the body, most commonly the lungs. Unfortunately, the incorrect diagnosis meant Frank spent the next four years receiving chemotherapy and radiation for cancer he never had. During this time, he moved to New York, where his new healthcare provider took imaging for unrelated digestive issues. Believing he was in remission, Frank was devastated when the X-rays showed more lung masses, signaling his supposed cancer was back. But his doctor wasn’t so sure and suggested another biopsy to confirm the original diagnosis. “There was a sarcoidosis clinic at my new hospital, so they did the leg work and determined I never had cancer to begin with. I actually had sarcoidosis the whole time,” he explained.
Frank was familiar with the disease because his brother-in-law had been living and managing it since the early 1990s. Feeling hopeful, Frank began treatment immediately. But he didn’t bounce back the way his healthcare provider had hoped, and another scan revealed why. "The radiation actually did damage. By the time I was correctly diagnosed with sarcoidosis, the disease had spread throughout nearly 75% of my body and was affecting almost every major organ, including my heart and brain,” Frank said.
Despite this setback, Frank and his doctor created a plan to try to treat the granulomas, though he stressed that achieving full remission would be difficult. Since then, Frank has been on a number of different medications that have come with side effects, but he has found a routine that works for him.
Creating the Support He Needed
Once he received his accurate sarcoidosis diagnosis, Frank set out to find information and support groups. He found a few online resources but discovered that there was little information for actual patients about what to expect and how to live day to day. Frank decided this was unacceptable and began his journey to help other patients with sarcoidosis by founding his own non-profit. “We call it the snowflake disease because no two people get it the same way, but I hoped to at least give other patients someone to listen and relate to them.”
His initial idea was to help patients find doctors by contacting other patients and getting reviews which he documented and shared. Then, after attending a convention for rare diseases in 2012, he saw that the need was much greater. “The founder of EveryLife Foundation came up to me and said I was the first patient with sarcoidosis to attend. He also shared that because it was so rare, there was limited awareness and funding directed toward my disease. And that lit a fire under me,” Frank said.
He began to advocate aggressively and often for sarcoidosis awareness and fund raising. He attended meetings in Washington DC, wrote articles, conducted television interviews, provided keynote speeches, and even helped get a billboard about sarcoidosis in Times Square. During this time, he frequently reached out to other organizations for assistance in getting the word out, which is how he found the American Lung Association.
The Mental Strain of Chronic Illness
Despite his determination, Frank also faced the emotional toll that can come with living with a chronic and often unpredictable disease. There were times when the weight of managing his condition and the uncertainty of the future felt overwhelming. With the support of a counselor, Frank was able to work through those difficult moments and find a path forward. “It can be a very painful disease and when you feel like there isn’t any hope for a cure, and it's hard to find someone who understands, it can feel isolating,” Frank said. “But having someone to talk to made a meaningful difference for me.”
This led to Frank establishing an online support group so that all patients, even those who were bedridden, could find solace in each other. This group has become particularly helpful for patients who live in rural areas, as their inability to join a face-to-face support group can make them feel isolated. Other participants have now taken over the group, as Frank steps back to focus on his health.
Even if it is being treated, patients living with sarcoidosis can experience flare-ups. Frank says he never knows how he is going to feel when he wakes up, but he tries to give himself things to look forward to. “I set one goal for the day, and if I complete it, then I’ll set another. But I have learned that if I don’t complete it, instead of kicking myself I just need to adjust. I realize that with this disease I need to be positive. If I don’t make it out of bed today, I will try tomorrow.” By allowing himself small victories, and giving himself grace, Frank has been able to improve his mental health considerably.
To other people living with sarcoidosis, Frank stresses, “be easy on yourself. That doesn’t mean don’t make goals but learn to make smaller goals and celebrate the victories.” For caregivers, he suggests really listening to their loved ones. “This disease can be so hard on the body, and though someone may say they are okay, you just need to be there for them and understand that they are doing the best they can.” Lastly, Frank hopes that his story will inspire change and lead to more research and better treatments for this challenging disease. “This disease has been around a long time, and many people still don’t even know it exists. We are beginning to see advancements, so we are moving in the right direction, but there is still so much more to do.”
Blog last updated: April 15, 2026
