#049 – Are you living with arthritis? Lauren Amendola, Arthritis Foundation, and Joanna Green, mom of an arthritis patient, share their stories about how arthritis has impacted their lives and the resources available to help patients and their loved ones.
How the Arthritis Foundation helps arthritis patients
Patient stories about diagnosis and treatment
Importance to keep moving when you have arthritis
Lauren Amendola Lauren Amendola is the Executive Director of the Arthritis Foundation in Connecticut, has spent her almost 20 year career in the health non-profit industry. Building her skills and resume at the United Way, MDA and Autism Speaks, Lauren found a deeper passion at the Foundation as an arthritis warrior herself. She enjoys her friends and family, the beach and time at home with her husband and 6 year old daughter, Gianna. They reside in North Branford, CT and are settling in with a new rescue cat!
Joanna Green Joanna Green is from Southington, CT where she lives with her husband Kyle Green and two children, Karly and Ashton. Her daughter Karly is an arthritis warrior and is the Youth Honoree for the 2022 CT Walk to Cure Arthritis.
Welcome to Episode 49. Millions of people are living with arthritis today. And in this episode, we want to raise the level of awareness, share key resources, and let you know how you can help. Of course, always seek the advice of your physician with any questions you may have regarding a medical condition, or treatment. And before starting any physical activity, hope you enjoy. Here’s what you can look forward to on this episode of Inspire Virtual Runs Podcast.
Joanna Green 0:31
So I was gonna say that Arthritis Foundation has been helpful as far to give you resources and kind of guide you in different directions. And also, there’s some great support groups out there that have been really helpful for myself and a lot of parents throughout the country even just as far as like giving advice on which doctors are great in the area and, and how close it is to specific hospitals. There’s a lot of it’s a very tight knit community because we’re not a huge, huge community. And we do work very well and helping each other on the foundation plays a big piece of that as well.
Welcome to Inspire Virtual Runs Podcast, whether you are new to running or seasoned, get tips and the inspiration that you need to achieve your health and fitness goals. Now, here’s your host, Richard Conner.
Richard Conner 1:21
Hi, everyone, welcome to Inspire Virtual Runs Podcast. Today is a really special episode because we’re going to talk about arthritis and learn more about it as well as dispel some of the misconceptions about it. And we have two special guests with us today, starting with Lauren Amendola, who is the Executive Director of the Arthritis Foundation in Connecticut. She has spent almost 20 years in the health nonprofit industry. She’s been building her skills and resume at the United Way, MDA and Autism Speaks. Lauren found a deeper passion at the foundation as an arthritis warrior herself. She enjoys friends and family, the beach and time at home with her husband and six year old daughter Gianna. They reside in North Branford, Connecticut and are settling in with a new rescue cat. We also have Joanna Green, who is from southern Connecticut, where she lives with her husband, Kyle green, and two children, Carly and Ashton. Her daughter, Carly is an arthritis warrior. And as the youth honoree for the 2022, Connecticut Walk to Cure Arthritis. So I just want to say welcome to the show. And thank you so much for being here.
Lauren Amendola 2:34
Joanna Green 2:35
Thanks for having us.
Richard Conner 2:36
Yeah, absolutely. I’m really excited about this topic. Number one, because it’s not a topic we brought on the show before. So this is new, which is great for our listeners, but also the opportunity to learn more about it, as I think there’s probably some misconceptions about it, but also just maybe not a lot of information about it. So let’s just kind of jump into the conversation and start with you, Lauren, to learn more about your journey and how you are at Arthritis Foundation,
Lauren Amendola 3:05
I was able to learn more about the foundation, ironically, not because of my diagnosis and having rheumatoid arthritis, also known as Ra. But connecting with a friend who had done one of our events, the jingle bell run, which I know we’ll talk about, you know, in the future, but she was raising money and had a team and I thought to myself, I should be part of this. And I never really talked about having arthritis, and really kind of owning it and making people more aware. And when I saw that there was a foundation and an event and I couldn’t be part of it. That’s how I started. And then months later, there was an opening as a staff member. And it really kind of fit not only my career in the nonprofit health world, but then also in the arthritis side of the world. So that’s what brought me here. And I’m excited to be part of it all and to help others.
Richard Conner 3:58
That’s, that’s really wonderful. And I love your story about how your friend got you involved through the fundraising event, which it’s kind of interesting, because in through a number of my interviews and conversations, I find that there are some times folks who start to run or become runners through these types of opportunities through like a fundraising event, and this is their first 5k. But they’re doing it for a great cause to support a friend or family member. So not only did you do that, but you join the cause. And you started with the organization. So that’s great.
Lauren Amendola 4:31
Exactly, yeah. So it was great. And that’s exactly what we do kind of in our mission and our community work is to make those connections and bring friends in and really be able to celebrate some of the barriers of arthritis but using those connections to do so.
Richard Conner 4:48
Wonderful. Wonderful. So let’s talk a little bit about Arthritis Foundation and then you know we’ll move over to Joanna and and talk about her and her family as well. But let’s start with Arthritis Foundation. Can you tell was a little bit about, you know, what you do and what you provide?
Lauren Amendola 5:04
Yeah, Arthritis Foundation has been around for over 75 years. And we’re the largest nonprofits solely focused on arthritis. And really the dollars and the time that’s spent in research, resources, camp, other events, community connections, it is truly amazing to know that we have this Foundation, an organization, just focusing on that. And so that’s exactly what we do here in Connecticut, as well, we do special events and fundraising, but we really try to connect our warriors and families together, using community connections and support beyond the resources we have, and also connecting a lot with our health care providers, they’re really kind of the first entry way into this diagnosis, and then where to turn would be us. So building those relationships as well, is what we do, you know, at the foundation nationally, and here locally in Connecticut.
Richard Conner 5:59
Wonderful, and you have these wonderful events that we’ll get to in a little while. We’ll talk more about those. But, but that’s really wonderful to hear. And, you know, is there anything that you could share about just arthritis in general that maybe the listeners wouldn’t normally know, I know, we know, arthritis. And I know, we think about probably older patients with arthritis. So you know, what could you share that maybe listeners wouldn’t normally know?
Lauren Amendola 6:24
Sure. And I think that’s a really important kind of question to lead me into a topic that does surprise people. So we do say this isn’t your grandparents disease. One in four, over one in four Americans have a doctor diagnosed arthritic disease. So we’re talking and this is through the CDC, as well as there’s nearly 60 million people who have arthritis, and a higher percentage of people under 65 have arthritis than those over 65. So it’s really important to know that and that includes children. It also includes all arthritic and autoimmune diseases that fall under that. So that could be as I discussed about my diagnosis, rheumatoid arthritis. But we also are talking about osteo, arthritis, and even things like Lyme disease, lupus, gout, those are all falling under that umbrella as arthritic diseases.
Richard Conner 7:21
Okay, I did not know that. That’s very interesting. And, you know, kind of along the same theme of the patients who are affected under 65. Let’s turn our attention for a moment to Joanna. So, you know, welcome to the show, Joanna. And I really love to hear your story. You know, just a little bit about you and your family. And as I understand, you know, your family has been impacted by arthritis. So would like for you to share that story.
Joanna Green 7:46
Sure. Yeah. So my daughter is she’ll be seven on May 1, and so she’s had arthritis since before she turned to nothing we ever had anticipated, doesn’t run in our family. It’s one of those things. It’s not hereditary. It’s just kind of people get it. And that’s kind of theirs. Really, they don’t know why or how or anything like that. So she woke up from a nap one day had a swollen knee. We didn’t think she didn’t fall we kind of were racking our brains that she hit it and she followed it to bang it nothing. It’s because we went to the doctor, and they did X rays. They did blood tests. They tested her for leukemia for Lyme disease. Arthritis was one of the things they were looking for different things. Maybe she had a cold and her body just wasn’t done fighting the cold and it caused some inflammation. So we tried some shoes on the practicing for a little while, and that didn’t really do anything. And so they referred us to a rheumatologist up at kind of a children’s. And we saw our doctor there and she was officially diagnosed with juvenile idiopathic arthritis, specifically oligo articular. Because for her, it was only her knee that was impacted. So she had fewer than five joints. So from there, she had a cortisone injection and they drained her knee and that cleared her knee almost instantly, which was amazing. But because of the type of arthritis that she has, we also had to keep an eye out for UVI desk, which is inflammation in her eyes, which unfortunately she was diagnosed with. And so that was the piece of it that was harder for us to kind of get under control. And again, going into this we didn’t know anything about arthritis and children and then especially UBI, this and how they really do go hand in hand. So she’s been on a combination of humera which is an injectable medication and then methotrexate as an oral medication. And with you know proper maintenance and seeing her doctors and the medication. She has had no flare ups for quite some time. And we’ve also taken her off of the methotrexate a few months ago we’ve been seeing no inflammation and so hopefully, you know going forward we can eliminate the humera and keep her inflammation You’re free, which would be the goal without medication. So exciting stuff, hopefully. Yeah,
Richard Conner 10:06
you know, I’m sure that must have been a scary time, especially for a child who’s so young and having to go through the diagnostic part of it as well as the treatment. So, yeah, yeah,
Joanna Green 10:16
it was a bit traumatizing. I will say initially, you know, putting your kids through X rays and bloodwork and all and like as a parent, you’re terrified because they’re throwing around things like leukemia, and Lyme disease, and even arthritis at the time was very scary for us, because she wasn’t even to we had no idea. I mean, I remember my grandmother having arthritis, that’s kind of what I thought of. But we’ve come a very long way. And she’s been able to live an incredibly normal unimpacted life aside from her, having them have the medication and maybe being a little bit more cautious, you know, around flu season and things like that. But she’s gonna start track, she’s done tennis, she’s tried snowboarding and skiing. So she really lives the life of any other six or seven year old kid without having an impact. And no one really even know she has it kind of like what Lauren had said, she doesn’t talk about it a whole lot. This new thing with her being the honoree is the first time that she’s openly talked to people about it and kind of said, like, Hey, I have arthritis. And like, if you have any questions, let me know. And it so it’s been a huge impact, a huge step for her. And, you know, for all of this, so it’s huge.
Richard Conner 11:23
Yeah, that’s wonderful. And that’s really cute that she’s, you know, that she’s comfortable with having that conversation. And she’s accepted that that’s great. And, you know, something that you said kind of triggered a question. So did they did the doctors know immediately kind of what was going on with her when you started to see symptoms? Or did it kind of take a while, like was arthritis kind of down the list? Before they realized what it was?
Joanna Green 11:49
Yeah, it was on the list of things they were looking for. But they had thought maybe because I think she had had a cold not too long before and so they thought maybe she had I think what they called reactive arthritis where she had a cold and her body kind of didn’t stop fighting the cold. So in turn, it was affecting itself and they thought maybe with some antibiotics and approx in that that would take care of it, but it didn’t. So we try that didn’t make any difference. And then that’s when the rheumatologist kind of did a full exam, they really looked at her lab work and kind of studied everything and determined that she did have, you know, juvenile idiopathic arthritis, and it wasn’t caused by anything else. She had no, no fractures, no bruises, no, nothing that would indicate an injury is the kind of ruled and they ruled out leukemia and Lyme disease. So that’s how they kind of got to the official diagnosis of arthritis.
Richard Conner 12:40
Okay. Okay. And, you know, kind of switching back to Lauren for a moment, you know, I’m just wondering, is, is it maybe common, or maybe it’s uncommon to have undiagnosed patients, maybe they, they go in with present with symptoms, and they never really get to that point of diagnosing arthritis? I’m just wondering if you have any data or any information on that?
Lauren Amendola 13:02
Yeah, I mean, we, we definitely see that I don’t have any hard data, there might be some out there. But that certainly happens. Because we will hear stories over and over about it taking so long they thought it was Lyme disease. Not all of these are detected types of arthritic diseases are detected through blood work. So there definitely is a lag in time, or misdiagnosis. Um, you know, and even for myself, I was diagnosed at 19. But I had issues from Middle School on ARM and so we thought it was sports, or it was so random and unconsumed consistent that, you know, if you think back if I was diagnosed earlier, I think a lot of times things have happened over the decades to have awareness and understanding and rheumatology. You know, I might have been considered a ja, kiddo. So we do see that we hear stories and we we see it not being the easiest or best thing to diagnose for a few reasons that there’s not that many rheumatologist, it’s not this hot medical practice to be part of. And so that’s one issue, and also the availability of hospitals and and those physicians and the knowledge of your primary care physicians also. So I think it’s really a combination of the proper questions and tests and in in rheumatology and arthritis aren’t always the first, the first thing that physicians and parents think or talk about so that does happen. And Joanna mentioned some medications that Carly was taking, and I really want to educate our listeners and have everyone keep in mind that those are medications that adults would take as well. So there’s no pediatric medications. Of course the dosage is different, but there is no different medication and these are injectables or infusions sometimes once or once a week, twice a month quarterly in the hospital. So these beds Patients are pretty intense. There’s also some young kids that go on low dose chemo to really help keep the body and joints and inflammation under control. So this is really, you know, no, no joke. And and so that’s why we love to talk about it and really educate everyone.
Richard Conner 15:17
Yeah, that’s great. And I appreciate you sharing that information, and even sharing your own story, you know, as I’m kind of thinking about it. For our listeners, if you know you or a loved one presents with these types of symptoms, don’t rule out arthritis, if you’re under 65 is kind of my takeaway, right is, is really make sure that, that this is not something that’s just rolled out because of your age. So that that’s really helpful, it’s helpful to hear about some of the therapies. And one thing that you said Joanna, was really interesting about how your daughter is really looking to or is playing sports and starting up track. And, you know, I love that because I think that, you know, we may try to use some of these situations as maybe, to say, I can’t do that I can’t run or I can’t play sports. And in her case, you know, obviously, she’s going through her treatments, but she’s, she’s getting out there. So what does that like, I
Joanna Green 16:11
mean, as soon as we figured out the inflammation, her knee and her joint was, I mean, literally back to normal after the procedure. We got the okay from the rheumatologist that she could try anything she wanted to try. And as long as she didn’t have any pain or discomfort, and none of her other joints, you know, started to become impacted, that she could continue trying everything she wanted to try. And which was great, because because she’s in she’s so under control with the medication, we haven’t had to worry about, oh, she falls, if she does this, she does that. I mean, like any normal kid, she actually fell out like a month ago, split her chin open and got stitches. So she’s living the life of a very, very typical six year old, who does very careless activities and different things. And so it hasn’t held her back in any way. And I think that could be part of why she hasn’t talked about it openly is because it’s not visible to anybody, there’s no way that anyone would look at her and know, so she has been able to kind of, you know, fly under the radar, so to speak. And so, it she just kind of blends in with everybody else. And we’ve been very, very fortunate. And as Lauren said, with the, with the doctors here in Connecticut, especially where we are in the Hartford region, we’re very, very lucky to have an amazing rheumatology department up at Children’s Hospital. They their their doctors, their nurses there, they all are on point, they’re always there to answer questions and help. And then for Carly with her UVI does, she actually does see an eye disease specialist, where she’s the youngest patient in his office we go in, and it’s mostly senior citizens. So that’s kind of another kind of like a lag, like what Lauren was saying, with the medical field, there’s not a lot of pediatric doctors that specialize in this type of UVA area. So a lot of the kids if they can get into a doctor specializing in that they’re mostly going to be going with, you know, senior citizens and people who have glaucoma and, you know, uveitis for different reasons, not necessarily arthritis, that’s kind of a, you know, she’s kind of stands out at the doctor’s office, I guess you could say, so, you know, but we’re very fortunate for the the care that we have here. So,
Richard Conner 18:22
and I know that something that, you know, we had discussed prior to this conversation is about, you know, really making sure that you can find that care where you live. And like you said, you’re very fortunate that that’s here, but it sounds like that that might not be everywhere, right? Not, maybe not everyone has that opportunity. You know, that’s really interesting for the listeners to know that they’ll have to really kind of search for it, depending on where they live.
Joanna Green 18:48
Yeah. So I was gonna say that Arthritis Foundation has been helpful as far to give you resources and kind of guide you in different directions. And also, there’s some great support groups out there that have been really helpful for myself and a lot of parents throughout the country even just as far as like giving advice on which doctors are great in the area and, and how close it is to specific hospitals. So there’s a lot of it’s a very tight knit community, because we’re not a huge, huge community. We do work very well and helping each other in the foundation plays a big piece of that as well.
Richard Conner 19:21
Yeah, that’s great to hear. And, you know, I was just about to ask Lauren about those resources, like how was Arthritis Foundation role and kind of all this. So you touched on a little bit. And if there’s anything you want to expand Lauren on that,
Lauren Amendola 19:33
sure, um, arthritis stop or we have something called a Resource Finder. So that is narrowing down not only the state you live in, but your zip code, and so it will pull up all rheumatologists in that area. And we have great relationships also with orthopedics, physical therapists, the eye doctors, so it’s not just rheumatology. I mean, this is a whole full circle, a lot of pain management also. So on our website, there’s an arthritis binder that can narrowed down some hospitals and departments and physicians, as well as other resources beyond the doctors on on any kind of topic. So you can be putting on our website, the third type of arthritis, you have the event, you want to go to volunteering or meeting a virtual support group or an online, in person connect group, all of that can be found. And that’s what we’re doing to do disseminate on all local levels to our families and warriors.
Richard Conner 20:32
Wonderful, wonderful. And let’s talk about that a little bit more, because I know that you have awareness and fundraising events throughout the year, and one is coming up very soon. So why don’t you share a little bit about, you know, at least the one that’s coming up? In the next few weeks, we could share that with the community here.
Lauren Amendola 20:50
Yes, it’s coming up very soon, Sunday, May 15, at Trinity health stadium. So that’s where the Hartford athletic play, they just had changed the name of the stadium. So we’re making sure everyone knows it’s the old Dillon stadium. And that’s called our Walk to Cure Arthritis. So we have that event once a year. It’s our signature event across the country. And so really, in May, and June, they’ll be walked to Cure Arthritis events across the country happening. And we all have the same theme. And we are all coming together. Even though we’re in each of our own states, to celebrate our warriors and bring our families together, it’s been over two years, since the pandemic not being able to be in person, especially our younger population, our Walk to Cure Arthritis does attract a lot of our our kiddos in the juvenile arthritis, also known as ja population. And so we wanted to make sure and be ready to have this safe and fun event. So we were excited and ready. Again, that’s may 15, the Walk to Cure Arthritis in Hartford, and that’s an event where you have to register, but it’s free, it’s free to attend, it’s free to come, you even get a ticket to an athletic game, this season or next of your choice for even just registering and supporting. And so that’s great to also find community partners that would give an incentive to our supporters and come together. And yeah, the goal is to raise funds, and also awareness and make connections. That’s where a lot of people will, we’ll be able to meet each other chat. We have, we have doctors there and pharmaceutical companies and people can really get resources and information.
Richard Conner 22:27
And you know, kind of as we were talking before, these are great opportunities for you know, folks not only to get involved in in these types of causes and learn more and to support, but also just on the physical side, just get moving, right. As I mentioned before this, this is an opportunity where I’ve seen so many people decide that they want to start running five K’s half marathons and marathons just because of they want to support one of these causes. So this is just a wonderful opportunity, literally, they could walk before they run, right with this upcoming walks. I love it. Exactly. And,
Lauren Amendola 23:03
you know, you might have heard this saying about, you know, keeping your muscles loose and moving. And that really is the best for arthritis. And we’re just talking about some movement. And we understand there’s all types of abilities, and disease states and also pain. So of course, always talk to your physician about any physical activity, but we know it’s good, it’s good to get moving, even if it’s just up out of a chair or getting outside and the nice weather, if that’s the best for your body and your joints. And so that’s what we love to also present. You could go as little or as long during the the actual walk and we’ll be doing for loops around the stadium. So it comes out to a little bit of a over and a mile. But we’re doing the four loops to represent the one in four Americans are 25% of the population with arthritis. But some people don’t some people sit and cheer us on some people run all four. And it’s really it’s just getting out there and being together. And so yeah, we’re excited.
Richard Conner 24:02
I love this conversation. I’m so happy that we met. And you know, as we wind down here, I’d love to hear from you from both of you. If there’s any parting words that you’d like to share with our community so maybe Joanna we could start with you.
Joanna Green 24:18
You know, I would say if you’re a new parent with a diagnosis for a kid it’s it hurts initially but with you know time it does get easier and just working with your kid to make sure that they’re comfortable and giving them an answering any questions they have and just being there to support them and doing the research that if they have questions you can help them and utilizing your doctor and the community. So there’s a lot of great support out there and while it is a scary diagnosis for a lot of people it you know it’s manageable and versus those that it’s not it’s accepting people and just understanding that everyone’s journey with this is different and realizing that you know, there is no one way to have arthritis. There is no one way to deal with arthritis, and you just have to do what works for you and find the resources and the help and just be there together. And just utilize what you have around you and see what’s out there and rely on it. Because it’ll help. It’ll be what gets you through the hard part of the diagnosis. And even the times when, you know, when you’re leading up to giving your kid that shot, and you’re just having a day where they’re not not feeling it, it’ll kind of give you that boost of like, okay, we have to do this because this is what keeps your joints, your joints in, check your eyes in check, and just kind of giving yourself a pep talk, giving your kid a pep talk. And just knowing at the end of the day that that’s what is needed to continue on and to move on. So
Richard Conner 25:38
wonderful. Wonderful. Thank you for sharing, Lauren, anything that you’d like to share with our community?
Lauren Amendola 25:44
I would you know, our Arthritis Foundation has a little bit of a motto called we live Yes. And live yes and say yes. And we really want to provide a community and resources and connections and all the right tools for you to be able to live yes with arthritis. So that might be leading up to a 5k that might just being able to connect with someone and talk about your diagnosis because you’ve never done that. So say yes to doing that. And so we’re offering all of the tools and resources to do that. And so I want people to be a little bit more understanding and aware of arthritis. I want people to think of it, and others and then also turn to the Arthritis Foundation. And we’re here to help.
Richard Conner 26:27
Wonderful. Thank you, Lauren. So how can our listeners our community, find Arthritis Foundation and follow you online?
Lauren Amendola 26:36
Go to arthritis.org. When you search Connecticut, or events, it will know where you live and it will pull up any events, connections, community resources and tools in your area. And on Facebook, we have Arthritis Foundation, Connecticut, and we are now on Instagram at Arthritis Foundation CT.
Richard Conner 26:58
All right. Well, I will certainly include all of that information in the show notes. So for now, again, Lauren, Joanna, thank you so much for coming on the show. Thank you for helping raise awareness to this topic with everything that you that you do. And Joanna, your daughter is so brave and now talking about it. So I hope I get to meet her at the walk, you know, in a few weeks. But again, thank you so much for coming on the show and have a great day.
Joanna Green 27:24
Thank you. Thank you.
That’s it for this episode of Inspire Virtual Runs Podcast. If you enjoyed this podcast, please leave a review. Also, be sure to click the subscribe button so you don’t miss an episode. Thanks for listening