Advancing Health Care Through Research: Our Patients’ Stories

I have sickle cell disease (SS). I didn’t
really understand it growing up, I just knew that I would get pain every so
often. It didn’t hit me that it was lifetime, life — lifelong, and that I would
be dealing with this. It was a hard pill to swallow when I realized that this is
it. Yeah, the life expectancy is limited,
mostly by the disease itself. They end up with kidney failure, and sometimes stroke,
sometimes heart attack is a result of this disease. When you have sickle cell
disease, it’s not a good idea to become fatigued, you have to make sure that
you’re hydrated all the time, extreme cold, extreme heat, even an
extreme fluctuation in the weather. The patients go into crisis. I don’t know
when it’s gonna happen, so it’s always been hard to plan for the future. My
future is tomorrow, because I don’t know when I will get a pain crisis and then
that’ll be it. I have to go to the hospital. There’s over a hundred and
forty million emergency department visits across the US every year. It’s
important for us to understand what’s happening in those visits and research
in that environment is critical. I was excited to hear that there was a
study for sickle cell and that’s what made me want to sign up to do it, because
as much as I wish there would be something new, I am more than happy to
help so hopefully that we can find something —
even anything to help. A little over a year ago, I was diagnosed with stage 4
melanoma. What I understood with melanoma was that there was no real treatment. You
know that chemotherapy and radiation weren’t really working and there would
be in a life-altering disease. Anytime a cancer metastasizes and it’s in other
organs, you know, that — that is a time to worry. If it had been left unchecked it
would have just kept spreading, and you know it could have meant the end for him.
Am I going to see my granddaughter grow up? I have an 18-year-old son, I have a 19-
year-old daughter, that are just starting their life. Well, am I going to be there
for them? You know, I just felt like a lot of things I haven’t accomplished in life
and didn’t know whether I was going to be able
to do that. Research offers new options, new hope, and I think that’s why research
is so important. Without it we wouldn’t be where we are.
We wouldn’t be advancing healthcare and that’s what we want to do is advance
healthcare. Because at one time when I started, there was very little and the
median survival for these patients were six to twelve months. But nowadays we
have so many more treatments that are really changing the lives of our
patients. Kevin chose to explore treatments and we had a clinical trial
that was available for him. When I got to meet Dr. Kumar, I just had all the
confidence in world in her. And I just knew that everything was going to be okay.
She — she has been just, you know, God sent. You know, I remember in medical school
one of my professors saying 50 percent of what you’re learning is wrong and it’s up to
you to figure out which 50 percent. Scientific inquiry is part of our responsibility as
physicians and as healthcare providers. What we hope will happen as a result of
this is that they’ll spend less time in the hospital and these painful
sickle-cell crises, we hope that it will decrease the duration and the severity
of these episodes so they can go about their lives. So all of a sudden, in the
last couple of years, immunotherapy, which are drugs that up
regulate a patient’s immune system, really gets it revved up, gets it going,
so that it actually attacks the cancer cells. So not only were we seeing the
cancers disappearing, it was actually having a lasting effect.
I have hope every single day. When I go through the treatment, I go to work the day
before, I go to work today after, and even though I’m doing the immunotherapy, I
don’t have any restrictions. And it’s just normal life. Nothing, it’s like I didn’t have anything. Like I didn’t have cancer.
I can clearly notice a difference in that my stay was much shorter. I was out
in three to four days. So it made a huge difference. To have that peace of mind
and to be somewhat normal would be amazing. To participants like Jessica,
thank you for taking part, thank you for trusting us. Because of Kevin, he changes
the standard of care for so many other patients coming down the pipeline. There
were other people before me. They got it to this point. If I can help get it to
the next point, that to me, it’s — it’s just amazing. I am so grateful that I’ve
participated in this and it could actually lead to a huge breakway is — it
makes me proud. It’s a great privilege for us to be able to be involved in this
kind of thing. And to MedStar thank you for having this as part of your mission
and vision and allowing us to participate. To be able to possibly bring
about new treatments, to bring about new hope, that’s exciting!
Could this be the next magical thing that helps them feel better? It’s in our
fingertips, right? I mean when you see a patient that actually gets results like
this that you never dreamed about before, you think, “Wow! This is attainable.” Thanks
for giving me my life back. Keep opening doors on research and
thinking of other ways that we can live a better life. Just want to thank you. Thank

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