My Life as a Rare Disease Patient

My Sarcoidosis Story

You get that call you feared. You have cancer. Hours go by. You decide how you're going to tell your family. You research treatments and statistics. You start to wonder if you're going to die.

This was a reality for Frank Rivera.

In 2004 he started having breathing issues and couldn’t walk for any amount of time. He was also experiencing severe cough and pain in his lungs. After a biopsy showed lumps in his lungs his doctor would diagnose him with lung cancer.

Frank would later find out this was a misdiagnosis and would spend the next 4 years battling cancer he didn’t have, and enduring other medical complications due to the error.

"I received courses 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.

According to the Foundation for Sarcoidosis Research (FSR), Sarcoidosis is an inflammatory disease characterized by the formation of tiny clumps of inflammatory cells—called granulomas—in one or more organs of the body. This disease is difficult to diagnose, and many patients suffer for years before arriving at the correct diagnosis.

Throughout his life Frank has witnessed the toll medical issues can take on a family.

When Frank was in kindergarten he was diagnosed with Childhood Leukemia in which he missed half of kindergarten through half of fourth grade. He would also end up in foster care after his mother had major heart surgery, 1 of 8 heart procedures she would have in his youth. It took a year until she was medically cleared to take care of her children again, but it wasn't the last time Frank would spend time in foster care due to his mother's medical condition.

He knew he was in for a fight.

In 2009, Frank met his now wife Diana online and moved to New York to be with her. He worked as an office for manager for a few years before owning his own concrete sealant distributor. In 2010 he learned that Diana was pregnant. Their daughter, Isabella Joy Rivera 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, he said.

A few days after his daughter’s death Frank was back in the hospital for lower abdomen pain. After x-rays and CT scans the doctors told him it was his IBS acting up. He would return a few weeks later with the same stomach problems, as well as breathing problems. This is when Frank would find out he has Sarcoidosis.

The cancer treatments on top of the new medication Frank was taking to treat Sarcoidosis left him in the hospital for 25 days in late 2011. He would have his gallbladder removed along with a foot of his colon.

"I was on 40 mg of Prednisone as well as Klonopin and Mysoline for the tremors, Zoloft for depression, Protonix for the heartburn, and Advair for the lungs." Frank said.

In 2012 Frank had another surgery to remove his colostomy bag. A few weeks 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. When Frank woke up with a smile, the doctors told him it was a miracle he was alive. He would later have surgery for incisional hernia making it six surgeries over three years.

Last year (2017) Frank was diagnosed with Parkinson’s Disease.

Patients with Sarcoidosis can experience other complications associated with the disease and medicines according to FSR. Sarcoidosis is classified as an inflammatory disease, though it takes on many other diseases symptoms. This makes it difficult for doctors and researchers to determine the cause and produce a cure.

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.

Sarcoidosis of Long Island is an advocate organization that works with local county, state and national government officials to gain recognition and raise awareness for the disease, according to their website (www.sarcoidosisofli.org).

Frank said starting the nonprofit was tough, but worth the challenge. He said that even if they can help one person it was worth it.

Frank’s organization has had three Sarcoidosis 5k Fun Runs, a movie fund raiser, and a Friendly's Dinner fundraiser. Their 4th Annual Sarcoidosis of Long Island Awareness Walk is on April 14, 2018 in Mount Sinai, NY. The event is held in conjunction with walks all over the world supporting Sarcoidosis patients and research.

"I want everyone to know that no matter how hard this disease has affected my life, I will keep a smile on my face. Even though I am on disability, I know that it may have changed my life, but it won’t run my life. I refuse to give in to this disease. There are days where I cry and ask, 'why me'. I just answer myself by saying God only gives you what you can handle."

Through his organization Frank has worked with the state of New York to get a resolution passed making April Sarcoidosis Awareness Month. He has received a letter from President Barack Obama for his hard work and dedication and is working on a federal resolution with Senator Chuck Schumer to make April Sarcoidosis Awareness Month on a national level.

In 2016 he hosted the event A Day for Rare Diseases. The event featured speakers from all different aspects of the rare disease community including government officials.

Frank is currently working with Stony Brook University Hospital in Stony Brook, NY to host another Rare Disease Day. The event will help raise awareness for the 7000 rare diseases.

Frank has received several acclamations for his individual work and work through his nonprofit.

Frank was nominated by Global Genes, a nonprofit that serves the rare disease community, for advocate of the year. Global Genes has also nominated Frank for their annual Rare Champion of Hope award. He has also been nominated for two awards by WEGO Health partners, Patient Leader Hero as well as Best Kept Secret. He was also nominated by RDLA for advocate of the year.

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.

Frank turned 50 last year. He said what defines him is his strength to carry on, and that Sarcoidosis is what he has not who he is. His mission in life is to help others that have diseases where on the outside you look fine, but on the inside the pain is unbearable.

“As I turned 50 I realized how much my past has made me who I am. It’s why I do what I do. I am a fighter. I am here because I am a fighter!” Frank said.

“I was told many times I wasn’t going to make it, but here I am.”

Frank said he owes it all to his mom. Watching her endure all the medical procedures throughout her like taught him to always fight. She was sick for most of her life and fought for Frank and her family.

Frank lives this every day.

Well-Being, Health and Wellness, Life Lessons

The Thrive Global Community welcomes voices from many spheres. We publish pieces written by outside contributors with a wide range of opinions, which don’t necessarily reflect our own. Learn more or join us as a community member!