JACKSONVILLE, Fla. — At the age of twenty-three, I'm working the job of my dreams looking to start my own charity foundation. Then, out of nowhere, I'm blindsided with the news that I have a rare disease known as Von-Hippel-Lindau Disease.
The month of May is VHL awareness month, and ever since I was diagnosed almost a year ago, I have been spreading the word of the disease as much as possible! VHL is a rare genetic mutation that happens while in utero and causes tumors and cysts to form throughout the body.
I have been blessed to be a part of the small percentage of people with VHL who are asymptomatic. However, through multiple MRI scans, I found out I have a tumor on my spine, four tumors in my brain, multiple cysts on my kidneys and pancreas.
Was I scared? Absolutely! But, I haven't let it stop me from living my life. I have taken this diagnosis and used it to my advantage. For one thing, I'm writing a book that will soon be released talking about my diagnosis and how I still continue to live a happy life!
With May being the awareness month, I want to shed light on this rather unknown cancer causing disease not to scare you, but rather inform you. With the current pandemic, the last thing I want to do is make you even more stressed than you may already be. With that being said let's talk about the facts, NOT the fear.
According to rarediease.org, only 10,000 cases have been documented in the United states and according to UAB, the chance of a VHL holder being de novo is 20%. (De novo meaning the VHL holder did not receive the mutation from either parent.) I fall in the 20% category, and luckily since my diagnosis was caught extremely early, my MRI scans that I get every three months are just a precaution! If I were to have problems in the future, my doctors would be able to easily handle the problem.
Side effects that can come with VHL include: headaches, problems with balance and walking, dizziness, weakness of the limbs, vision problems, and high blood pressure. Luckily for me, I didn't experience any of these symptoms when I was diagnosed! If you experience any of these symptoms, talk to your doctor and see if they recommend you get a CT scan.
I only found out I had VHL because my great uncle had an aneurysm burst behind his eye. Since My family and I knew that aneurysms could be genetically passed on, I had a CT scan done that, according to the radiology technician, showed "something in my brain." Three months later, my geneticist told me I have VHL.
I would be lying if I said it was easy to find answers to the questions I had, even WITH Google! Trying to find information when I was first diagnosed felt like trying to find a needle in a haystack bigger than our First Coast! But, once I found out about the VHL Alliance, they helped answer a lot of my questions and made me less worried about my diagnosis.
If there is anything I have learned from this diagnosis it's that 1. Life is precious and every day should be lived like it is your last. 2. We truly do have superheroes who wear scrubs! Moffit Cancer center in Tampa is where I have to go to have my doctor appointments that are VHL-related. And even though it's a three-hour drive, it's well worth it to know that I have the best team of doctors taking care of me! In fact, one of my doctors is holding a fundraiser for VHL awareness. If he raises his goal amount, he will shave his head!
I tell you my story not because I want to throw a pity party, but rather because the more people that know about this disease, the more well known it becomes, thus increasing research. If there's one thing I want you to take away from reading this it's that you should never be afraid to enjoy your life, bad medical report or not, in a pandemic or not. Be smart about your life, but don't let a bad situation or a negative environment drag you down. YOU have the power to make the world a better place and ever since my diagnosis, the dream in my heart to bring hope to others who feel they have no hope left has only grown stronger!
If you wish to support VHL awareness you can use the thumbnail on this article. The symbol is the symbol used by the VHL Alliance to show awareness for VHL.