My Patient/Patient Advocate Journey

My Patient and Patient Advocate Journey starts in April 2004, in Florida. You see being an avid runner since 7th grade and that was a huge part of my life and opened so many doors including a scholarship to college.  So, by the time April 2004 came around I was totally in tune with my body. I was running 4-5 miles a day at the age of 36. I was going out to do my daily run as I have done each morning before work. This day was different. I woke up not feeling well. When I say not feeling well, I am saying trouble breathing and just a heaviness in my chest. I had felt a smaller case just like this before but went out to run and things always seemed better.

This day was much different. I started my run and got to about the quarter mile mark and had to stop. I felt like I could not even walk anymore. The pressure on my lungs felt like I could not breathe anymore. I was wondering if I was dying. Looking back maybe I was exaggerating, but then again after receiving the worse news possible a month later, maybe not.

In May 2004, I thought I heard the worse news ever in my life. I went to my doctor and was told “You have Lung Cancer.” The news caught me off guard. I never smoked; I was in great condition physically. How could this happen. I was told that they could not do surgery as the masses were in every part of my lungs. I was told the best possible treatment was a “cocktail” of chemotherapy and radiation. It was a new treatment that they have had some success with to fight small cell carcinoma. So off I went and started treatment. Well let me tell you that was one of many mistakes I have done with my diagnosis odyssey. I went through 4 years on and off from chemotherapy and radiation, for which I found out 7 years later was all for nothing.

That is right, for nothing. In 2009, I moved back to New York after being told I was in remission. In 2011, I had some stomach issues, I have IBS as well. I went to the emergency room, while being checked up an X-ray showed masses in my lungs. Here I am thinking I had Lung Cancer again. I was told to go to a local cancer center. I went and they did a biopsy of my lung, to find out that I do not have Cancer. I have a rare disease called Sarcoidosis. I was like what is that? Only to find out that my brother-in-law has it as well and he was doing amazing and in remission, my wife and I thought okay cool this is not so bad. We were even told by a doctor “At least it is not Cancer.” Boy were we wrong…

My symptoms kicked in for me in 2011, they were trouble breathing again, then some new ones. The new symptoms were pain in my joints, trouble with double vision, skin lesions, and trouble with remembering, with thinking itself and motor issues. By the time I was diagnosed with Sarcoidosis I had already was diagnosed with Sarcoidosis in 75% of my body.  The cancer treatment somewhat helped and harmed me in the same breath. The chemotherapy helped the masses from growing but the radiation made my body weaker and helped me get Sarcoidosis in other areas of my body.

What is Sarcoidosis? Sarcoidosis (pronounced SAR-COY-DOE-SIS) is an inflammatory disease characterized by the formation of granulomas—tiny clumps of inflammatory cells—in one or more organs of the body. When the immune system goes into overdrive and too many of these clumps form, they can interfere with an organ’s structure and function. When left unchecked, chronic inflammation can lead to fibrosis, which is the permanent scarring of organ tissue. This disorder affects the lungs in approximately 90% of cases, but it can affect almost any organ in the body. Despite increasing advances in research, sarcoidosis remains difficult to diagnose with limited treatment options and no known cure. In everyday terms my white blood cells get over-reactive when I get a cold, or any other problem that needs my white blood cells to fight off, they go to fight but instead of fighting the clump together and form masses in the body, anywhere. I personally have it in every major organ of my body except my pancreas, well not that I know of.

What I know now and what I should have known then, is the reason I am an advocate for the Sarcoidosis Community. I would never want to see anyone else go through what I have been through.

But then I found out some different areas of concern for the Sarcoidosis Community. The two major concerns are the mental health of the community and clinical trials. The mental health I have been addressing with a National Virtual Support Group and Forums.

The clinical trials are a big issue for the Sarcoidosis Community. Diversity in clinical trials is especially important for the Sarcoidosis community because the highest ethnicity of people who get Sarcoidosis in the USA are African American women then the next highest rate is African American men, then Hispanics. But the percentage that is recruited for a Sarcoidosis clinical trials as African Americans is at 4%. That tells me they are not getting the true results for the population of Americans. Now do not get me wrong I do not just blame pharmaceuticals or researchers. I think it also belongs to the minorities as well to want to be a part. There is a disconnect and lack of trust that both the pharmaceuticals as well as the patients need to get over. There are also financial issues that the clinical trial researchers and pharmaceuticals need to work on as well so they can get more diversities involved as well.

The future for the Sarcoidosis community is so much better than when I was diagnosed ten years ago, but there is so much more to go. We do not have a cause which will really open up the research as well, but there are much more clinical trials then there were ten years ago.

The money for Sarcoidosis research has also been on an uptick and the awareness is growing but it has so much more to grow.

My goal is for everyone in the community and as well as pharmaceuticals to speak to each other and be able to utterly understand each other’s needs and wants to garner a common ground so that we can move forward and prosper as a whole community to finding a cure.

Author: fjr311

Frank Rivera- Founder/President- Sarcoidosis of Long Island Founder/President- RareNY Frank Rivera founded Sarcoidosis of Long Island in 2012. In 2011 Frank was diagnosed with Sarcoidosis after being misdiagnosed with lung cancer for 7 years prior. Since opening Sarcoidosis of Long Island he has been a local, state and federal advocate for Sarcoidosis to raise awareness for Sarcoidosis in the government sector. He has also spoke at two Congressional briefings for Sarcoidosis. Frank is a National Ambassador for Foundation for Sarcoidosis Patient Ambassador for Illumina Frank organized RareNY in 2016, to raise awareness for Rare Diseases in New York. He organized “A Day for Rare Diseases” in October 2016 in New York with Global Genes. The event raised awareness for all 7000+ rare diseases to the public.

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