The View from a High Schooler

Have you ever wondered what it’s like to be a kid with a rare autoimmune disease? 

In this special episode, the host of The CARRA Podcast, who is a teenager living with a rare autoimmune disease, interviews another teenager who has a rare autoimmune disease about their experiences with school, sports, friends, and medical treatments. They also share their frustrations, hopes and new perspectives on life.

Spencer Ableman shares his journey with vasculitis, from a terrifying and unexpected health crisis to accepting this tough diagnosis and learning to embrace life with new challenges. Spencer, who has an incredibly optimistic outlook, has a story that is both informative and uplifting. 

Spencer shares his experiences on everything from competing in a cross-country race with a port in his chest to explaining his condition to other teenagers. It hasn’t been an easy path, but he has found some silver linings – from having insider knowledge in his AP Bio class to seeing his friends waiting at the finish line of his first cross-country race. 

 “Even though it may seem like you're in the dark there's a light at the end of the tunnel and you just got to keep your head up if you want to see it,” says Spencer.

These two remarkable teens, who met at CARRA’s Annual Scientific Meeting, discuss what research means to them and why they are involved with CARRA.

Transcript

Claudette Johnson: [00:00:00] When I asked attendees at the CARRA conference last spring what they wanted covered in our new podcast, again and again I heard a similar message:

“I would love to have young patients give their perspective on where we should go.”

“What's it like living with an autoimmune disease as a kid? What do you wish your parents knew about your disease?” 

“I think the podcast should focus on how kids can have a lot of fun and build community despite the disease.”

“My idea for a podcast is a voice for the kids that are doing well.”

“The patient voice, including of our high school students, is very, very valuable.”

So, on today's episode, the view from a high schooler on what it's like to be a teen today with a rare disease. Friends, sports, school, family, research, medicine, doubts, frustrations, as well as new hopes and perspectives on life.

This is The CARRA podcast. CARRA is the Childhood Arthritis and Rheumatology Research Alliance. We are doctors, researchers, and patients, all working together to prevent, treat, and cure pediatric rheumatic disease. My name is Claudette Johnson, and I'm your host.

Spencer Ableman (speaking at CARRA’s conference): My name is Spencer Ableman. It's just so cool to see that, even though this disease and all the other diseases out there is so rare people are actually working on it. 

Claudette Johnson: Spencer is an 11th grader from Minnesota who had a harrowing health crisis, which led to a diagnosis of vasculitis in 2021. And that was him at the CARRA conference.

Spencer Ableman: And the numbers up on the screens and stuff, those are real people, and real people you're affecting, so I just want to thank you so much. 

Claudette Johnson: My hope is that you'll find his [00:02:00] story, along with his irrepressible optimism, both informative and uplifting. 

Spencer Ableman: Even though it may seem like you're in the dark there's a light at the end of the tunnel and you just got to keep your head up if you want to see it.

Claudette Johnson: Spencer, thank you so much for joining us. So, Spencer and I met at the CARRA Research Conference about a year ago. I remember you shared the story of how you were diagnosed. Could you share that again from the beginning? 

Spencer Ableman: I was on vacation doing a family reunion in Idaho. While I was there, I was getting super-duper sick. And for some reason it was like nothing I'd really ever felt before. I was just so fatigued. At one point I like couldn't even go up the stairs and my grandpa happened to have a pulse ox and he just checked me just in case. And I think I was at 70 at the time, which is super low. You're supposed to be always at a hundred.

So, I rushed quickly to an ER and I was at 60 by the time we got there. So they instantly gave me [00:03:00] pressurized oxygen, and it was just this little place, so they didn't really know what was going on with me. So they sent me to a little bigger hospital still in Idaho, and they just could not figure out what was happening.

The oxygen was helping, but I just was still super fatigued, and nothing they were doing would work, and they just did not know what was wrong with me. So, I got life flighted on a plane from there to Primary Children's Hospital in Utah. They were able to figure out within the first few days that it was something called vasculitis.

I have two types of it. It's called MPA and one of them is anti GBM. Basically, it's just like inflaming of your blood cells. So, my lungs were bleeding. They figured out on the life flight, I think, that I was having a lung hemorrhage. So, they got that fixed with the pressurized oxygen. And they put me on a bunch of prednisone and all that stuff.

And I ended up staying there 17 days. And they also put a port in my chest that I did plasmapheresis with. That stayed in for like a couple months after just in case, but they ended up taking that out. So that's kind of like the beginning of that. When I figured out it was the chronic disease, it was a little interesting cause I knew I'd [00:04:00] have it forever.

So yeah, it was just kind of like a really crazy couple of weeks. 

So, you're in a plane, you have all of this crazy medical stuff happening to you. What was going through your mind? 

Spencer Ableman: I was pretty scared. I was just like, what's going to happen once we touch down? In my head, I kept forgetting like where we were going cause I was so low on blood cells.

Just a lot of confusion again once, once I was on there. 

Claudette Johnson: Before you got the diagnosis, just, I can't even imagine. Could you talk a little bit about that? 

Spencer Ableman: Before I got the diagnosis, it was kind of just a crazy feeling, because me and everyone in my family have been generally, generally healthy, and I have not really experienced much of the doctor side of things.

Like, my grandpa is a doctor and all that, but I hadn't really been the patient. So I was just pretty scared. I was pretty out of it. When they put an IV in, I just felt super weird, and I was just really confused because I had just been thrown into this all of a sudden. 

Claudette Johnson: After you got the diagnosis of vasculitis, how did that change how you feel?

You [00:05:00] talked a little bit about it being chronic. I mean, what other sort of feelings were you having? 

Spencer Ableman: I kind of felt a little scared of the future because I knew it'd be forever and just very surprised, like, A lot of big questions started to come up and I started doing a lot of research on it because I had never even heard of it before.

So, I kind of started wondering like all these big questions like what do I do next or like is this curable? And yeah, just basically just a ton of questions. 

Claudette Johnson: I was diagnosed really young at the end of third grade and you have to live with this for the rest of your life. It can be really hard. What do you think has helped you come to terms with it?

Spencer Ableman: For me, I think it's just been like, embracing it almost. Knowing that there's not really a way to avoid it. You can try all you want, but eventually you're still going to have to like take meds and go to the doctor and all that. But for me, it's just been like trying to be part of the very small community that does have it and going to CARRA and all those things, those have really helped me deal with [00:06:00] it is just learning from other people and finding out the best ways that I can help out other people instead of avoiding the whole situation, I can be part of that community.

Claudette Johnson: Yeah, as I said before, we met at a research conference, and I'm wondering what brought you and your mom there? 

Spencer Ableman: Well, it always happens with this vasculitis stuff is my mom's just like, “Oh, this fun opportunity is coming up, you should do it.” And I'm like, “Oh, okay, and I just kind of tag along.” So that one I was just like, okay, I'll go. It's in New Orleans, I guess. It'll be awesome. But then, yeah, exactly, the beignets. But when I actually started thinking about what it actually is, I was like, oh, this will be a cool experience just to hear other stories and figure out how other people have dealt with it. And it was really cool to see like other kids, especially with rare diseases.

Cause that's even more rare to have a kid have this. 

Claudette Johnson: What was it like for you being there? 

Spencer Ableman: Yeah, it felt really cool. There was a couple of people there who were actually part of the original team at primary [00:07:00] children's hospital who helped me in the first place. And that was super cool to see. Yeah. They remembered who I was when I went up for a little speech.

And there was a couple doctors who worked on just MPA and it was just awesome to see all these people who are working specifically on my disease. When at first I was like, oh, I bet nobody even looks at vasculitis as a doctor. But yeah, that community was just awesome to see. 

Claudette Johnson: And have you, or I mean, your family or your mom, have you guys taken part in any research.

Spencer Ableman: For the research that we do, it's basically they'll be like, would you be down to do this survey or take a blood draw so that our research facilities can have that? We're always like, yeah, sure, because we know how much that helps. It's been awesome to do that. 

Claudette Johnson: For any kids who are listening to this, who are going through these things that we've just talked about, what do you think you would say to them to provide some comfort to them? 

Spencer Ableman: I'd say keep your head up. This is something in life where it's [00:08:00] like you can either make or break how you think about stuff. On one side of things you could be like, oh my life is over it'll never be normal again. Or if you try your hardest to fight through it or try to be normal, then that's something that really helps is just having a mindset of like, oh I will get through this, there's brighter days ahead.

For me it was like a really bad situation. Everything just kind of thrown off the rails. But in my head I was just like, well one day I think I can get back to normalcy and right now I'm living in a situation where I'll see the doctor just a few times a year and I'll take, I'll take daily meds and stuff.

But the big things are in the past and even if you know there's other big things that that are ahead of you, just know that you can still have a normal life. 

Claudette Johnson: Just like living your life knowing that you're not quite like the other kids. How do you think that's affected you? 

Spencer Ableman: It's had its ups and downs for sure.

When I first got back from the hospital, I still had a port in just in case they wanted to do some more of the [00:09:00] plasmapheresis. It basically just replaced all my blood with just new good blood, basically. It was super weird. So I have this port in, and this is mid-summer, so I couldn't swim with it. When we'd have beach days, I'd just be like, sitting on the beach and wouldn't be able to go in.

So I'd talk to my mom about stuff and talk to my friend's mom. It's been interesting because stuff like that is like, “Oh dang, I missed out on this.” But then there's also times like in my AP bio class because I had this, I knew a lot of stuff in there just because of past experiences. It'll have its ups and downs obviously, but it just kind of made me feel like even though it's different you can make it good. 

Claudette Johnson: I've gone into school with IVs before for kids going through this thing that's different about you what would you say to them?

Spencer Ableman: I'd say embrace it. If people ask you about it, be down to answer stuff. At first I would wear like my hoodies really high, just so people can see it. But then I was like, well, screw it. Like we all have our own little [00:10:00] things about us. So, I'd wear my shirts normally thing coming up. They'd be like, what's that?

And so, it'd kind of be like a conversation starter, almost being able to have it as a thing where you can openly talk about it is kind of a good thing because I mean, your whole life, you're going to have to talk to doctors about your disease and all this. Being open to your friends and people at school about it.

I feel like most people will like be like, “oh, that's interesting.” The people who will be like, “oh, that's weird,” those people aren't worth talking to anyway. So, I'd say, I'd say just embrace it. 

Claudette Johnson: For anyone out there interested in wanting to help, in wanting to be supportive, what do you think they could do?

Spencer Ableman: Just always helping out in just every little way you can. My mom. When it first started, my mom got me this little pill thing to just keep track of that stuff. Cause in the mind of a patient, there's so much going on. It's hard to keep track of every med or every doctor visit. So as a parent or friend, just [00:11:00] being able to help in any way you can, like if you know your friend with a rare disease or a kid with it, just having like a flare up or just a rough kind of time, like just getting dinner for them.

I know when I was in the hospital, my dad's boss got us a lot of food gift cards and I was super grateful for that. So just the little things, like letting them know that they're not alone in this and that they have support and help. 

Claudette Johnson: Yeah, just supporting in any way possible. How do you think that you saw just handling in school specifically that sort of support come through for you? What helps, and what worked for you? 

Spencer Ableman: Well, I have this pretty cool story from my cross-country season So I have this friend that when I moved in he was like, “oh you should run cross country,” I was like, “oh, that'd be cool.” And then the whole vasculitis thing happened, my body was just not ready for it, but I still did it anyway.

Cause I was like, this might be a good way to just get back into routine. And the first meet, I still had my port in, so I was not very fast. I was [00:12:00] super slow and I was pretty overweight from all the prednisone, just wanting to eat all the time. So my first meet, it was just this really short meet, but I had to walk so much.

I was going super slow. And I think I was last on the team. My mom told me this later, one of my friends was like, Everyone, let's go watch Spencer finish, let's cheer him on. And at the end, all these people were cheering for me. And even though I was in last place and it just felt super good to just see that support, even though I looked different, it was slow and I had the port in.

My friend was still there for me to see me finish. So that was just a really awesome experience. And that there was so many other times with people being there for me. Like I hosted a vasculitis fun run thing with my, our local charity called BHVC, Brett Hack Vasculitis Charity, and a bunch of my friends went to that and it was that same cross country friend group. So, having them always be there for me has been really cool. 

Claudette Johnson: That's so amazing. I mean, other than the good times, I feel like we should talk a little bit [00:13:00] about just, did you feel any frustration? I mean, you had all these plans like running cross country and then all of a sudden, the disease comes out of nowhere and just changes things, you know, forever.

Do you find frustration in that ever? 

Spencer Ableman: Oh yeah. There's always going to be stuff. I just wish I could do this, but you just can't like when I couldn't swim over the summer like before I see that as I was doing this little football camp and I was Kind of wanting to play that, but that window completely closed because with the port, I obviously couldn't play and I was very out of shape.

So there's always frustrations about that. And at the time I was still taking prednisone, which that like actually makes you more prone to be mad. So just a lot of the time, there'll be things that will just be big setbacks. You can just be feeling like, “I'll never be normal again, or I'll never be able to find opportunities to do this again.”

But I feel like [00:14:00] just knowing that. Things can get better just pushing through them. You can kind of stifle those frustrations. So yeah, there's a lot of them, the frustrations, but there's ways you can get through them if you try. 

Claudette Johnson: And if you had to name one thing that helped you the most to get through all of the frustration that you felt, what would that be?

Spencer Ableman: I would say finding time for myself was a big thing because a lot of the times, it's only you that really knows what you're going through because the disease is so rare. And especially at the time, I didn't know anybody who had anything close to it. Me finding time for myself, listening to music, or just watching a movie by myself has, that actually helped a lot.

Claudette Johnson: That's good advice for any parents out there as well. Just to be aware, you know, there's such a mental and emotional part, as well as the physical part of the disease that people have to deal with all the time, as sometimes they just might need a little space, a [00:15:00] little room to breathe. Anything else you want to add?

Spencer Ableman: For everyone out there who's a parent or patient or whatever, like I've said before, just keep your head up. Don't give up because the times when I've been like at my lowest lows, I've just been like, I can't do this. It's not worth trying to like live a better life, but that's not true because it'll always be worth it.

You just always have to find that thing for you that really helps you push through. For me, it was like my friends and eventually running and stuff like that helps me a lot. Just exploring new things you can do because it's like almost a new life. So even though you do have those restrictions, just making the most of the stuff you can do.

Claudette Johnson: Spencer, thank you so much for joining us. 

Spencer Ableman: Thank you for having me.

Claudette Johnson: The CARRA Podcast wants to hear from you. If you have a topic for an upcoming episode, head over to our podcast page on the CARRA [00:16:00] website and leave us a message. We might play your voice on a future show, and we'll do our best to answer your questions. Finally, we encourage you to share the CARRA podcast with friends, patients, and anyone else interested in learning more about the incredible work of the CARRA community, dedicated to creating a world free of limitations for children with rheumatic disease.

This podcast is produced and edited by Emily Nguyen. Our music is by Jonathan M. Horner. Thanks for listening.