“If lymphoma is part of your journey, you're part of ours.”- Lymphoma Ladies
“So actually advocating for myself was something I didn’t really understand or know that I had to do. I thought my doctor would just understand and get it right, essentially. ”
Claireliese Kennedy is an inspiring example of courage, strength and hope in the face of adversity. After her diagnosis with lymphoma as a young adult, she chose to turn tragedy into triumph and founded the Lymphoma Ladies. This empowering organization provides a safe place for young adult women who are battling or have battled the disease. Through this organization, Claireliese has been able to share her story of resilience and connect with other survivors while encouraging them on their own journeys towards recovery.
Claireliese has been very open about her struggles with being misdiagnosed and not receiving the scans and tests she needed for an accurate diagnosis. She was often dismissed by doctors who told her there was nothing wrong despite the fact that, at one point, she had become too ill even to stand. It wasn't until Claireliese received the help of a patient advocate that she was able to receive the scans she needed for her diagnosis. Claireliese Kennedy is a powerful testament to the importance of advocacy and self-care. Her story has reminded so many people that they should never be afraid to stand up for themselves and get the help they need. Thanks to her story and her efforts, Claireliese is now helping others who may be facing similar struggles. She is using her voice to raise awareness for adolescents and young adults (AYAs) with cancer so that no one else has to go through what she did in order to get an accurate diagnosis.
Connect with Claireliese and the Lymphoma Ladies through their Instagram @lymphomaladies
“Being young, [we] need more representation and advocacy. I wonder, had we caught it sooner, how things would have been different?”
Interview Transcript
[LYNDSAY] Okay. All right. Hi, I'm Lyndsay Springer from the Chike Springer Foundation. As part of our Community Initiatives, we are interviewing other organizations and amazing people who are out there in the lymphoma community bringing us all together. Today we have Claireliese Kennedy, who represents the Lymphoma Ladies. Welcome!
[CLAIRELIESE] Thank you so much for having me.
[LYNDSAY] Alright, Awesome, So we'll start with, can you tell me a little bit more about your story and why you reached out to the Chike Springer Foundation?
[CLAIRELIESE] Yeah, well, why I reached out to the Chike Springer Foundation is they're huge in lymphoma, which I'll get to that in just a second. You do wonderful things for lymphoma research and patients in general, which is incredible. And then my story is I am a stage four Hodgkin's lymphoma survivor. I was diagnosed on January 26, 2022, and finished chemo August 1st. So I'm just hitting that three-month mark. Three-month mark, yeah. Yeah. The hair's grown back, so we're excited. But in doing that, I actually started this organization called Lymphoma Ladies. We're working on becoming a nonprofit right now. And so what I do is I create a...we do weekly online socials for young women, AYA age, that have any type of lymphoma. And we say past or present so you can be out or just diagnosed. It doesn't matter. But if lymphoma is part of your journey, you're part of ours. So yeah, that's my spiel.
[LYNDSAY] I really like that. Is that your phrase? If lymphoma is part of your journey, you're part of our journey.
[CLAIRELIESE] No, so I actually just said that, but I really want to write that down
[LYNDSAY] Well, we are recording, so you will have it.
[CLAIRELIESE] Yes, perfect!
[LYNDSAY] So, yeah. So do you want to talk a little bit about your diagnosis and kind of from the perspective of being a young person, what that was like, and kind of why you went and advocated for yourself, you know, knowing that lymphoma is actually rare in women and kind of how that process all happened?
[CLAIRELIESE] Yeah, so...I started getting sick last August, so August 2021, and I went to my primary care physician so many times with new symptoms. It started as a cough and it was during COVID time, so they just kept testing for COVID. And I was like. I got to the point where I started getting tested before I'd even go to the doctor because I was like, This is just this, isn't it? So it was easily brushed off at that point. And then I just kept getting more symptoms and it just kept getting brushed off. So actually advocating for myself was something I didn't really understand or know that I had to do. I thought my doctor would just understand and get it right, essentially. But the primary care physicians have so much going on in their own world and there's just so much that it could have been as well. But the fact that it was nothing was really worrisome because I was getting sicker and weaker. It got to the point where I couldn't even stand to fill my own water bottle. But nothing was happening. So we actually ended up getting some scans, which I did have to advocate for myself for. I begged them to give me some CT scans & we found masses in my chest and pelvis along with like smaller ones scattered throughout my body. And with that, I was able to find a kind of patient advocate, actually, which is someone who works with hospitals to get patients the care they need, which I had no idea existed, but that I'm pretty sure saved my life. I was circling the drain, as my mom puts it, which is always really emotional to hear. But I was like, I couldn't function. I was sleeping all the time. It got to the point where I couldn't keep food down because the tumor had grown in my chest just so large that it was, I think it was hitting my my gag reflex because it wasn't that I couldn't eat. It was that I would cough so hard I would throw everything up. But yeah, so advocating for yourself, one, again, I didn't know that was a thing. And then two, when I found a patient advocate was within a week, I was diagnosed and had a treatment plan. That is incredible.
[LYNDSAY] Yeah. Thank you so much for sharing your story. You know, we've met many young people who have similar stories just because a lot of times, too, young people can really take on a lot of the disease burden before they're circling the drain, as you put it, which is is very emotional. I mean, I felt that and I know exactly how that how that kind of feels with the unknown there. What do you think people miss with either the young person's perspective or even the women's perspective? Because obviously, you recognized the need for women to get together for their uniqueness within the disease community. However, you know, being young is also a a smaller group as well.
[CLAIRELIESE] Yeah. So I think being an AYA, adolescent young adult, person of cancer is a very unique experience in and of itself. Just for one, I am the youngest. No, I am like the only person in my immediate family or friend group or even acquaintance group has had cancer like I am the first one. So in terms of like in terms of that, like we didn't know what to look out for. It doesn't run in my family. It is just a chance event that happened that my cells started to mutate like we can't find a reason, which is so unfortunate because I really want there to be a reason. But as well as being young, especially with doctors kind of brushing off symptoms, like I was very healthy, I was very active. I ate well; I did all the things that you need to do. So cancer was the last thing on anyone's mind, mine included until it started getting more developed with the symptoms, then it was...yeah. So being young, it just there needs more representation and advocacy because I wonder like had we caught it sooner, how things would have been different? Probably not much, but it's just. It's incredible. That's just incredible.
[LYNDSAY] Yeah. You know, we say cancer doesn't care. It doesn't care who you are. You're a good person, bad person. You did all the right things. You exercise. I mean, obviously, those things have have play, but I know how you feel. As far as you know, I did exercise. I did eat the right things. You know, I'm doing everything right. I'm being nice to the nurses. I'm like being a good person. And unfortunately, you know, the disease continues. And that is something that we at the Chike Springer Foundation have identified as one of our things that we focus on is that underrepresentation in research. So we focus, as you know, on the AYA population, Veterans and then People of Color, which are statistically underrepresented in clinical research. So thank you for that little, I guess, setup for that plug.
I want to talk a little bit more about what you do for the Lymphoma Ladies. Some of the things that you guys do for your social events. I know you, we spoke before, and you said that you had to do a lot of virtual events. Are you thinking you're going to move that to in-person, or do you have people all over the country or like who comes to these events and kind of what what kind of information do you share?
[CLAIRELIESE] Yeah, well, first off, I just want to say I love what you're doing with the Chike Springer Foundation. It's incredible. And I'm just glad someone's doing it and I'm glad it’s you. I know it was from unfortunate circumstances, but but thank you for doing this work. So Lymphoma Ladies, we are currently only virtual. However, we do have plans in the hopefully not-so-far future to go in-person as well and offer to social interaction and education for ladies with lymphoma. So my typical demographic is, like I said, young ladies with lymphoma. We typically go with ages 19 to 35, although like if you're out of that range, like please reach out. And that's just what our little niche is. And right now, we're actually international. We have a bunch of ladies in Canada and all over the United States, and we've had people reach out from other countries as well, but I haven't quite got them into a social, but I'm working on it. So our reach is broad and I really think that it was just there was such a need for this because, like you said, like lymphoma for women, it's pretty uncommon. It's more common in men. So that being one, and then I kind of when I was diagnosed and going through treatment, I was a very social person and that was hard for me not having those outlets. And then, when I would go to a support group, I couldn't leave without like bawling my eyes out or feeling like, like the world was ending and not to say anything bad about support groups, but I just didn't find what I was looking for. So I really felt that there was a need to start something. And that's where Lymphoma Ladies comes in. And we keep our socials about a nine-person max. And so they're pretty intimate and it's really just a conversation. I've picked topics in the past, but really they run themselves essentially. It's wild and all my lymphomies; love them. They keep the conversation going, and it's just a very inviting place. So and then future we are working on doing some in-person and I don't want to get too far ahead of myself with that, but those are our plans and I'm so excited.
[LYNDSAY] That's awesome. I'm excited for you. I think what you're doing is amazing. I think it's much needed. The social piece, not to mention COVID, but also just going through the treatment and not having somebody that understands that was huge. I know from our perspective as well, just even being a caregiver too. So I think that what you're doing is awesome. I hope to help you grow and you know, awareness is obviously in line with our goals and part of our mission, and we're just so happy to showcase you as part of our Community Initiative and thank you so much for your time tonight.
[CLAIRELIESE] Thank you so much. It's a pleasure.
“When I was diagnosed and going through treatment, I was a very social person and that was hard for me not having those outlets. And then, when I would go to a support group, I couldn’t leave without like bawling my eyes out or feeling like, like the world was ending and not to say anything bad about support groups, but I just didn’t find what I was looking for. So I really felt that there was a need to start something. And that’s where Lymphoma Ladies comes in.”