My name is Jasmyn Ramirez, I’m 21 years old from California in the United States! I’m a fourth-year college student majoring in Cinematic Arts and Technology! I love all things film, whether it be watching them or participating in making them, and hope to direct my own features some day!
How were you diagnosed and how long did it take?
I was diagnosed at 19 after waking up one random morning with intense abdominal pain. I made my way to Student Health on campus where they promptly sent me to E.R. with concerns of severe appendicitis. I walked out of the emergency room 19 hours later with a tumor diagnosis in hand. They biopsied the next week and found that it was a sympathetic retroperitoneal paraganglioma. Further tests confirmed the cause to be associated with an SDHB gene mutation, and that the tumor was also attached to my Inferior Vena Cava and abdominal Aorta. From diagnosis to resection, my treatment spanned a little over three months. Most of my doctors had never treated a tumor like this in their careers, over 100 years of collective experience with no knowledge of paras.
What treatment have you had and how did it affect you then and now?
Most of my treatment took form in hormone control to prepare me for surgery given that my catecholamine levels were up to 7 times higher than normal. I was placed on several medications, including doxazosin and phenoxybenzamine, that took an extreme toll on my physical health. At one point, my blood pressure was down to 50/30. Once my medications were controlled, they resected the tumor by laparotomy. Today, I have a 7-inch scar that runs the length of my abdomen that signifies my fight.
What impact has the diagnosis had on your personal life?
In many ways, my diagnosis has impacted my family. Once they found the hereditary gene mutation, the rest of my family had to get tested. In the end, we found that my father and two of my sisters also carry the gene. Each year we try to remain positive as we go through our annual screenings.
I’d say I also have a lot of medical anxiety and PTSD. An unforseen consequence of my experience is that I can no longer watch Grey’s Anatomy without physical cringing and wanting to crawl out of my own skin.
What lessons have you learnt along the way (if any)?
I’ve learned most of all that nothing is constant. Life can change and your whole world can be flipped upside down in an instant so it’s best to live in and cherish the present. Prior to my diagnosis, I was a very future-oriented individual who was never focusing on what was happening now. Now I try to stay in the moment. Things can change for the worse, but they can also change for the better! None of us have any control in the matter so it’s best to accept things as they happen, focus on what is, and not worry about the what ifs.
Who’s been your hero? Perhaps it was you!
After going through everything that I went through, I’ve found a greater sense of self-love and appreciation. For the first time in my life, I see myself as strong and capable of conquering anything, because I have. Of course, I wouldn’t be here today without my amazing team of doctors and surgeons and they’re my heroes in several ways, but, I like to think they played a role in helping me become my own hero as well.
Did you get any help from a patient organization during your journey?
I received lots of helpful information from the Pheo Para Alliance! They’re amazing!!
How are you now?
Now, I’m thriving. Living my life to the fullest and loving every second of it. I have a whole new perspective of the world and the beauty in it is never lost on me. I begin and end each day with gratitude.
Health wise, I’ve just completed my first annual screening since surgery and got clear scans. I’ll take my obstacles as they come to me!
