It’s not an uncommon occurrence for a rare disease patient to be misdiagnosed. It happens every day. When it takes an average of 7 years to get a diagnosis for a rare disease it seems that the journey through the medical community can be a long, tedious and boring one.
Except when they really screw up.
Then it stops being boring and becomes heartbreaking.
That’s what happened to Sarcoidosis Advocate, Frank Rivera. At the time, Frank was 36-years-old, and an otherwise healthy young man, an athlete who’d gone to college on a full scholarship for running. He never smoked. So when he started having trouble breathing one day, he was perplexed by the sensation. He got himself to the Emergency Room. He was expecting a diagnosis of asthma—or at worst, bronchitis. What the doctors told him behind the curtain of his hospital bed stole whatever little oxygen he had left in his body.
That’s what was causing Frank to struggle, they said. His x-ray had lit up with masses in both lobes. They wanted to start treatment right away. Frank was still digesting the news when he found himself going through chemotherapy, radiation and experiencing the ravages of cancer treatment.
But Frank didn’t have cancer.
He moved back to his native Long Island and a second ER visit brought attention back to the masses still growing in his lungs. Fortunately for Frank, he happened to be under the care of one of the most experienced Sarcoidosis doctors in the country. He was about to receive life changing news: what he’d been experiencing wasn’t cancer, but an inflammatory disease that affects multiple organs in the body, but mostly the lungs and lymph glands. In people with sarcoidosis, abnormal masses or nodules (called granulomas) consisting of inflamed tissues form in certain organs of the body.
He had been through four years of aggressive cancer treatment for a cancer he never had in the first place.
If you’ve ever wondered— what’s the point of spreading awareness about a rare disease?—this is the cautionary tale. When we don’t know that a disease exists, that it could mimic something else or be easily mistaken for a different disease—we lose the battle. How could Frank have known he didn’t have lung cancer? He had never even heard of Sarcoidosis before.
Today, it’s his mission to make sure that this case of mistaken identity never endangers another patient again.
Though he’s still fighting his own medical battle, Frank has fought hard to bring the Sarcoidosis community out and into the spotlight. He’s lobbied, met with his local representatives, held support groups and awareness events. He is the impetus behind April being Sarcoidosis awareness month in his state, and now he plans on making it a national awareness month.
Frank was recently honored for his work:
There are plenty of ways to get involved with spreading Sarcoidosis awareness this month! Check out the full list of events Frank has planned for the Long Island community.
Conference room #5 from 6pm-8pm.
This Support Group Meeting is going to be a special Town Hall meeting open to the public and will have pamphlets about Sarcoidosis from the national organization, Foundation for Sarcoidosis Research, who will be there.We do have confirmation from Town of Brookhaven Council members Jane Bonner and Valerie Cartright, Suffolk County Legislators Kara Hahn and Sarah Anker, tentative yes from NY State Senator LaValle’s office as well from US Rep. Lee Zeldin’s office. We will be discussing where we are as a community and also as support for this community and all rare diseases mentally and physically. We have been working with The Town, County and State with helping the rare disease community with affordable or free counseling. This will be a new adventure for all of us but we are excited to be working on a joint venture. I would love to work on a national plan for counseling of Rare Disease patients. I have been dealing with so much uncertainty with Sarcoidosis and other rare diseases with the disease itself as well as insurance. In the Sarcoidosis community alone 37 people have passed away since January. 6 more have died from suicide.This past week I have had 4 people call me with the feeling of giving up. I have found some sort of help but I know the despair of having a disease with not much of an outlook.