My Story Then and Now

I am making videos about my journey with Sarcoidosis and Parkinson’s. I made these videos with the hope it may help at least one person to show them 3 things. I want you to know we all have our own battles and wars. Don’t ever think yours is too menial. We deal with what we are handed! 

1- Never Give Up! You are strong enough to fight! My motto is “I have Sarcoidosis, but it doesn’t have me!” 

2- One person can make a difference! You and your story means a lot. Don’t be afraid to tell your story!

3- You are Not Alone!

I made 5 Episodes (Videos):

Just click on the underline name of the Episodes to watch these videos. Good luck and I hope you understand my thoughts and feelings!! 

I do know they are long, but I wanted to put my feelings and my thoughts so you can see what I have been through and that you can still fight!! 

1- My Crusade to find a diagnosis.

My Crusade to Find a Diagnosis

2- My diagnosis and Surgeries.

My Diagnosis and Surgeries!

3- My Advocate Years.

My Advocate Years

4- 2018-What a Year.

My Story Then and Now- Episode 4- 2018 What a Year!!

5. Thank You All.

My Story Then and Now- Episode 5-Thank you

These videos tell some of my experiences with having a rare disease called, Sarcoidosis, and having Parkinson’s.  I know it has been a long battle, but honestly hope it will be so much longer! 

You see this battle has really taken me on a ride, but yet I am still here!! I am also still smiling!! 

These diseases have changed my life, but has not changed my will!

As I have always said ” I MAY HAVE SARCOIDOSIS AND PARKINSON’S, BUT IT DOESN’T HAVE ME!” I MAY PASS DUE TO THESE DISEASES, BUT I KNOW I WON!!! 

ME BEING ABLE TO WRITE THIS RIGHT NOW SHOWS THAT I HAVE WON!!!

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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