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I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

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Raele Robison - phaware® interview 249

May 24, 2019

PhD student Raele Robison discusses her scleroderma and pulmonary hypertension diagnosis and how her work in the field of clinical research helps her connect with the ALS patients she works with.

My name is Raele Robison and I'm a pulmonary hypertension patient.

So I am a PhD student. I go to the University of Florida. I was walking around campus taking classes, being involved in research and my classes and everything like that. Then I started noticing that I started just having random muscle aches, pains. I was getting really tired all the time. Given the type of lifestyle that I was living, it was really easy to attribute those things to everything else. So it was a little bit of denial occurring there too. If I was tired it was like, "Oh, I'm just overdoing it in class," and things like that.

But I knew something was wrong when one day I was trying to get from the parking lot to one of my classes, and I just could not make it there. I took 10 feet and it felt like I had just ran a marathon. So it was at that point that I went to go see a rheumatologist, actually, because of some of the other symptoms I was having. In March, 2017 I was diagnosed with scleroderma, and then one month later I was diagnosed with pulmonary hypertension.

When I learned about my diagnosis, it was the middle of the semester. It was really difficult because it was a very long process to get treatment for the pulmonary hypertension, just because you have to get set up with a doctor and everything like that. I remember I got to the point where I would come home every single day and I would just be crawling around my apartment because the scleroderma was ravaging my body, and then the pulmonary hypertension was obviously making it really difficult to breathe and do anything really. I just kept telling myself, “if I can just make it to the end of the semester, just make it to the end of the semester, you can take the summer off.”

So that's exactly what happened. I finished out the semester, and then one week later I was in the hospital getting treatment. Thankfully, I'm involved in research, which can be kind of flexible. I really didn't take any time off. My colleagues were yelling at me because when I was in the hospital I took my computer so I could write and work. Then once I got out, I just, last summer I spent time writing, and then I just went back to school in the fall almost as if nothing had happened.

But I can definitely still feel the effects of it, because I obviously wake up every single day with different resources and people I am in classes with and things like that. It's more challenging, but I feel like research has saved my life, and so it would be unfair of me to give up on research, and I feel like I need to give back. So that's what really keeps me going every day.

I work with individuals with ALS, so I do clinical research. I'm a patient myself, but I also work with patients as well. Becoming a patient myself has definitely informed my clinical practice better, because I think it's given me a little bit of street cred, because when people are coming in, especially with something like ALS, which is terminal, it's really rapid. Things are very scary. So when I'm able to come to them and say, "I know what it's like when your options are being taken away, and when you feel like you have this thing that's out of control, because I have something that in my life is out of control, and I need to spend extra time out of my day trying to figure it out." I'm able to connect with my patients on a different level than I was able to before.

Now, of course, I wish that I would've been able to connect to them without having this happen, but since it's here, it's one of those things like I might as well use that to my benefit. It makes me feel like the work that I'm doing now is just super important, and I have gotten really good care, so I want to be able to implement good care like I've gotten to other people.

I think the biggest thing that I've learned since being a patient and something that I wish I would've done more of at the beginning, is just really advocating for yourself, and reclaiming your narrative. I see it a lot with my own patients where I go in and I learn about them because I read their medical record. But you have to remember that you're a person before you're a patient, right?

So even though this disease can dictate a lot of things, and it can change the course of your future, ultimately it's still your life and you still have control over more than what you think you have control of. So don't let other people around you dictate your future. Let yourself dictate your future.

One of my favorite quotes is by neurologist Charcot, where he said, "Let us keep researching so that the fate of today's patient doesn't have to be the same as tomorrow's." I think that's why research and advocacy is so important because the things we're fighting for today will help really impact tomorrow. I believe that.

My name Raele Robison, and I'm aware that I'm rare.

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