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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