Evan biked daily. He had no symptoms. The diagnosis was fast, but surprising. Evan shares his remarkable story in this episode.
Leigh Clark: Hi, everyone. This is Podcast for Patients with the Aplastic Anemia and MDS International Foundation. I'm Leigh Clark, Director of Patient Services. Our podcast series is brought to you by the generous support of our patients, families, and caregivers, just like you, and our corporate sponsors.
Thank you to everyone for supporting the series.
Today we're going to be talking with Evan Rossman about his PNH journey. Welcome, Evan.
Evan Rossman: Hi, how's it going? Thanks so much for having me.
Leigh Clark: We're doing great. Thank you so much for spending your time with us today. Evan, tell us a little bit about you.
Evan Rossman: Yeah. So, a little context. LikeLeigh said, I'm Evan Rossman. I'm 29-years-old. I'm based in New York City, and I've been living here for around eight years, after graduating college. And I'm currently, you know, working, (laughs) enjoying life, spending time with friends, and yeah, just, just slowly moving along. But yeah, that's a little background on me.
Leigh Clark: (Laughs) Thanks so much, Evan.
Tell us a little bit about what were you doing and how were things going, um, before your diagnosis of PNH?
Evan Rossman: Yeah. So, I, I was diagnosed this point a little over two and a half years ago. Um, it was just ending COVID, I would say. Just about during that time I was, you know, biking a lot, I was extremely active as a person. And then, you know, obviously had sort of career goals, and, you know, with friends, was planning on traveling. Obviously with COVID, that sort of got changed. And you know, pre-PNH, I definitely had a different outlook on, you know, what I wanted to do, what goals I wanted to set... Both physically, mentally, professionally, stuff like that.
Leigh Clark: And Evan, what kind of led you to the diagnosis of PNH?
Evan Rossman: Yes. So it was, it was, you know, like I said, at that time, it was the summer and you know, the world was just opening back up, and I, I went to a baseball game with my father and my friend... And, and my father's in the medical field, and looked at me and recognized that my coloring looked off, and went to go get a blood test after that. I was hesitant to do so. You know, I wasn't feeling any symptoms. I was biking around (laughs) 20 miles a day at that point.
And then from there, once the blood test came back, my hemoglobin was under a five, or close to a five at that point. And from there, sort of the process began, and, and I got a lot of tests done. And, and, and during that period of, that week period of time, I was, you know, lucky enough to be diagnosed in only a week, and then my journey sort of started there.
Leigh Clark: Prior to giving you the formal diagnosis of PNH, did they kind of talk to you about other possibilities?
Evan Rossman: Yeah. It was more so that they weren't sure what was, what was off, but because of my hemoglobin levels... And then prior to, to that, which we found out obviously during that week of a lot of testing, was that my, my knee was very much hurting me, and I thought it was due to biking or exercise. I actually even got it X-rayed, and there was nothing that came back.
And after, you know, the diagnosis, the hemoglobin, we... You know, did a sort of scan of my leg specifically, and, and then that's when they found two blood clots. So the blood clots with the low hemoglobin sort of led to that diagnosis of PNH. It was sort of just the right time, right place. I mean, comparatively to what I've heard in the community, I'm extremely lucky to have been diagnosed in such a short period of time. Um, but those were the two main factors, so like the blood clotting in my leg and then the low hemoglobin count as well.
Leigh Clark: The diagnose of the blood clots must've been very scary for you and your family.
Evan Rossman: Yeah. Um, there were two blood clots in and above my leg, and I thought it was just like an injury from biking-related or exercise. And you know, I was actually supposed to fly, um, to Seattle, you know, the, the next week with my friends on a vacation, and you know, flying with blood clots is, is extremely dangerous.
So you know, it was a very scary time, and a lot of things were happening at once. It was a lot to take in, especially the diagnosis, the blood clots, everything else... Learning about the disease, it wasstressful and... Probably the most stressful time in my life up to that point.
Leigh Clark: Absolutely. And once you got the diagnosis, I mean, what did your medical team tell you about PNH?
Evan Rossman: Yeah. So lucky for me being in New York, uh, I have access... You know, I had access to doctors. I still have access to doctors, that are specialized in PNH and informed of it. And my hematologist at the time, he was the one who suggested it like three days into the week, being like, "You should look, look, um, at this disease and look up what it is and everything around it."
And unfortunately, you know, looking up PNH even two years ago was very scary. You know, the first article that I found gave a life expectancy of 5 to 10 years. Obviously, you know, that not being the case, but there was a lack of information, and, and the lack of, you know, knowledge on it... In the sense that I did get packets and pamphlets, but when you get diagnosed with any disease that is extremely serious or, or rare, it's a lot of information at once. You know, you're stressed about dealing with the diagnosis, let alone processing everything that's going on and being able to research.
So, it, it took me definitely a couple days and weeks to process everything. And you know, with the medical team, they, they provided me more so documentation, videos, understandings, learnings about PNH, but I think I, I really was able to process and synthesize everything when I got, uh, put in touch with someone else in the community. And I was able to talk to him in detail about PNH, what it was, what I can and can't do... My limitations, how he's, you know, surviving, how he's living his life currently.
And from there, I think I had a better understanding, but it definitely took me, you know, longer than you would expect to, to get up to speed with, with the disease.
Leigh Clark: Being diagnosed and trying to absorb all of that information is, is very overwhelming.
Evan Rossman: Yeah, it is. And it's a lot for, you know, I would say now... Not like an (laughs) you know, an old man at 29, but at 26... You know, my, my 26, 27, my whole perspective on life slash like, you know, understanding of where I was and, and, uh, was a lot different. And so, it, it was something that's like, you know, how could this happen to me at 26, 27? You know, I was doing this, um, and now I can't? Now I have to do this? And so, it was definitely something that, that at that time was, was really hard to, to process. I mean, it took a big weight on me both, you know, mentally, physically.
And, and just, me personally, I'm someone who likes to do a lot of research before I say something or do something, or, or just learn about something... Or say that I can, you know, do it, or... do this, whether that be like professionally or just in my personal life. So it, it was really hard to process this with the diagnosis, with my age, with everything going on... With like where I was, you know, in life, in the world. Everything like that, it was definitely difficult.
Leigh Clark: And with your medical team, what treatment options were you given?
Evan Rossman: So I, I first had to, um, go get a blood transfusion, and then an iron transfusion immediately. then from there, you know, I talked with my medical team about what different, you know, drugs to go on and what the recommendations would be. And, uh, you know, I went to get a second opinion as well. And at the end of the day they prescribed me Ultomiris. And, and that's the, the drug I've been on since diagnosis, as it's taken really well to me, and I've been, you know, really happy and well on that treatment.
And so, that was really the main, you know, treatment option at that period of time. That was the one that was recommended. And, uh, from there, since diagnosis, it's been going really well. And you know, I'm happy to say that there hasn't been much issues, uh, while on that treatment so far.
Leigh Clark: Have you had any side effects at all from PNH treatment?
Evan Rossman: Yeah, definitely, and I think it was... You know, some of them being like, you know, either rashes or fatigue, or you know, things along the lines of that, but, but not really that significant of, of symptoms of treatment, I would say. I think overall my experience has been great with the treatment, and it's definitely helping me.
It's just, you know, with this treatment specifically, it's every eight weeks, so I'm beholden to go to the treatment center every eight weeks, and I have to plan my l- my life and everything that I do around that schedule to a very intense, you know, regimen. Um, but after learning and understanding, that's how life's going to be for me moving forward unless something else comes along, I've been able to do that, a- and pretty well, I would say, this year so far.
Leigh Clark: Since you've been on treatment, how, how has life changed?
Evan Rossman: I mean, yeah (laughs). I mean, e- (laughs) everything's changed, I would say. For me, it's changed a lot mentally. Um, physically, I'm, I'm still able to do things that I wanted to do, and I think in that aspect I'm lucky that it hasn't changed. But definitely mentally, it takes a weight on you when you get diagnosed with a rare disease.
And, and being able to sort of still have the same goals, and whether for me, it was, it was professionally, like goals I wanted to do in my career in my lifetime. You know, being able to do those with this disease was a, a daunting feat. And I think that being able to, to think about it and, and understand, you know, everything's still possible. You, don't have to change everything about yourself, uh, just you have to be able to manage expectations and, and manage your energy, and, and say no and say yes to certain things. My life's become instead of, you know, saying yes to everything or saying no to everything, it, it's picking and choosing your, your battles and the things that you want to do.
For me personally, I still have the same ambitions and goals that I had before PNH, and I, and I want to hit them, it's just going to take a longer time to do that. And accepting that i- was the hardest thing, and I think that's... You know, saying nothing's changed would be crazy, but I would say that my answer would be everything has changed, and it's just, you know, making sure that I could get as close to, as I was before PNH with my goals and abilities, after PNH.
And I think as you get older, um, with, things change obviously, and you can't do what you want (laughs) to do anymore, you know, but you have to still keep those goals, and dreams and aspirations to move forward.
Leigh Clark: Evan, having a support team can be life-changing for patients. How was your support team supported you, and how has that impacted your journey?
Evan Rossman: Yeah. I would say that my support team's, you know, incredible, and it consists of my friends and family. I personally... getting diagnosed, told all of my friends and family about the disease. You know, about what to expect, about how I'm going to be, what the symptoms are, how sort of I'm going to be, you know, different moving forward. And, "I, and I, and I want you guys to know that, if I say no to a social event or if I'm not feeling well today or, or I have low energy, you know, understand that it, not that I want this, it's, it's part of the disease."
And the support team has been... You know, has been absolutely incredible. And I always recommend to other patients and other people diagnosed with, um, you know, similar diseases, to tell your friends, tell your family... Like, inform them of how you're feeling and what the disease is and what's going to happen, because it makes it a lot easier to go to certain events or, or do certain things. Or not do certain things, in that case. Tell them that, you know, "Hey, I, I'm not feeling up for this." Like, "I have a l- really low energy today. Uh, I'm not going to do it."
So being able to tell them earnestly and honestly ab- about how I'm feeling is extremely important, and it's helped me, you know, be able to reach goals that I want to this year and in my life moving forward. So the, the support team is everything to me.
Leigh Clark: Thanks so much, Evan, for sharing, um, all of this great advice. So, my last question for... My last question for you is if you could speak to a newly-diagnosed patient and give them one piece of advice, what would that be?
Evan Rossman: Hm, that's a... That's a great question, and this is what I would recommend, and, uh, it's obvious that PNH is different person to person. Every, every case is, is specific to you and, and you alone. But my piece of advice would be energy management. And what has worked well for me is managing your energy, and that means what I do... You know, how I operate by that is by, you know, resting or relaxing, or not doing things a certain amount of days, to be able to do that one event you really want to go to or that one thing. You know, you set your goal out that week.
You know, for me it's, for me it's the little things. It's like, you know, resting and relaxing because I have a friend's 30th birthday party on Friday. So not doing anything and, and, and balancing my energy, to be able to go to that event.
Or for me, it's sometimes as simple as like getting up and going to the gym or going on a 15-minute walk. You know, setting those little goals and managing your energy in order to go to certain events or to go to things that you want to do, that's the one piece of advice I would give to people, you know, who are diagnosed and who are trying to, you know, figure that out as they go throughout their diagnosis with PNH or, you know, other disease similar.
Leigh Clark: Thanks so much, Evan, for joining us today and sharing your own personal experiences to help other PNH patients and families.
If you'd like to find out more about PNH, please visit our website, AAMDS.org, or please feel free to give us a call, at 800-747-2820.
This ends our podcast.