In 2004, having breathing issues and couldn’t walk for any amount of time. He was also experiencing severe cough and pain in his lungs. After lumps in his lungs his doctor would diagnose him with lung cancer. "I received 4 years of chemotherapy and radiation. The treatments took their toll. At one point I weighed a mere 98 pounds." Frank said. In April 2011 an oncologist surgeon at Stony Brook Cancer Center in New York State correctly diagnosed Frank with a disease called Sarcoidosis. In 2009, Frank met his now wife Diana online and moved to New York to be with her. In 2010 he learned that Diana was pregnant. Their daughter, Isabella was born prematurely in January 2011. She died after a five days. "It broke our hearts to the core. That was the hardest thing I ever dealt with, more difficult, even than being sick." Frank said. Frank said the difference between losing a loved one and watching someone you care about suffer, and being ill yourself, has to do with control. When he is sick, he feels that he has some control over the situation. But there is nothing worse than not being able to help a baby, your baby, born with no defenses. That is a feeling of total powerlessness. A few weeks after his daughter’s death Frank was back in the hospital for lower abdomen pain. After x-rays and CT scans the doctors found masses in my lungs again. This is when Frank would find out he has Sarcoidosis. A few months later his colon ruptured, and he ended up with sepsis. The doctors told Diana that he had a 33% chance to live. He was on life support for 3 days during which the doctors reconnected the colostomy bag.Recognizing through his own fight that patients need to be diligent in their own care by keeping up to date with new medications, treatments, and research, Frank started Sarcoidosis of Long Island nonprofit. “We fight for those who can’t fight for themselves.” Frank said. He has received a letter from President Barack Obama for his hard work and dedication. In 2017 Frank was diagnosed with Parkinson’s Disease. In December 2017 Frank was named People of the Year in the newspaper organization TBR News Media six newspapers one being The Village Beacon Record News.In 2018, Frank was interviewed by NBC Nightly News about the “Right To Try” bill. They did a whole segment on his struggles and strength dealing with these diseases.He said what defines him is his strength to carry on, and that Sarcoidosis is what he has not who he is.In March of 2020, Frank caught COVID. His fight was tough. There were days in which he called his doctors to see if he should go to the hospital. He was told that if he went to the hospital it would be a death sentence. There were many nights where his wife watched him sleep to make sure he was breathing. He still has long term effects from COVID.
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My fight and advocacy with Sarcoidosis
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Autobiography about Strength & Resilience (My Life as a Rare Disease Sarcoidosis Patient, Before and During.)
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