Advocating for Rare Disease with Chelsea Streit - S2 E25

Stacy Griffin:  Welcome back to Autoimmune Adventures. We're so glad you're here. Today, we're talking with someone who truly embodies the heart of advocacy and the power of using your story for change, Chelsea Streit. Chelsea is a dedicated healthcare advocate based in New Mexico. She's been leading efforts to establish the state's very first rare disease advisory council, helping amplify patient voices and improve access to care for people with rare conditions. 

Becky Miller:  She's also personally living with Sjogren's and Cowden's syndromes, two complex diseases that impact her daily life. But that hasn't slowed her down and it hasn't slowed down her passion for education, empowerment, and change. and she and her husband, who's from the UK and also lives with Cowden's syndrome, are navigating medical systems together. Chelsea, welcome to Autoimmune Adventures. We're thrilled to have you here.

Chelsea Streit: Thank you. Thank you for having me.

Stacy Griffin: So let's start at the beginning. As we mentioned, you're living with two complex and one really rare diagnosis. So, Cowden's and Sjogren's - can you explain what they are and tell us the biggest challenges that you have to face because of them?

Chelsea Streit: Um, Sjogren's syndrome is an autoimmune disease where the body attacks healthy cells. Um, and in in the case of Sjogren's syndrome, it attacks the um glands in your body that produce saliva. So a lot of people typically have um dry eye, dry mouth. Um, but but it really can infect, can affect the entire body.  I um, I uh, for example, like I developed renal acidosis from Sjogren's which, which basically means that my kidneys don't filter out the acid for my urine and that's a result of Sjogren's. So, so sometimes it it tends to get a a reputation for being just kind of a dry eye, dry mouth disease, when in reality it can affect your entire body and, and um before you know and, and fatigue. Like before I was diagnosed with Sjogren's, I, I had a massive amount of fatigue to the point where I would sometimes have to pull over driving. So, so once I got diagnosed with Sjogren's, it it definitely answered a lot of questions.

Chelsea Streit:  And then um, in the case of Cowden's, that is a is a mutation of the P10 gene. And the P10 gene is a gene that everybody has that that is kind of is responsible for suppressing tumors in your body. And I was born, I was born with mine mutated. So that means um, you know, I'm unfortunately, I'm in at risk for for quite a number of cancers um and also a lot of benign growths as well um, that that constantly need to be removed, and so it's a, a lot of hassle with that. But I've, I've had a preventative mastectomy and a preventative hysterectomy and and um I recently a few years ago I got diagnosed with thyroid cancer. So I've had my thyroid out. So, yeah, definitely a lot of, excuse me, a lot of complications can come with that.

Chelsea Streit:  Um, I, I think one of the the biggest ones is I have off the top of my head, I think I have about six or seven different doctors. So, I find it it really hard to to get them on the same page, and and it's really kind of affects me. I, I, I even had one doctor say about another doctor, "Well, he should just let me do my job."

And it's it really uh that's that's been a pretty big struggle as far as trying to manage to two conditions. And um yeah, I, I think I could probably go on and on forever about the the struggles that come with it, but I think right now those are the ones that are most apparent in my life presently.

Stacy Griffin:  Well, thank you so much for sharing, because I think that the, the struggle with coordinating with your doctors is a struggle that a lot of people who have these kind of problems deal with. Is my cardiologist...if they just talk to my rheumatologist, if my rheumatologist would just talk to my nephrologist, if my nephrologist would talk to my hematologist. And there's just so many doctors that are involved in getting us taken care of that it is really frustrating.

Um, I don't know if we have ever mentioned this, but I'm going to mention it now. We have a dream that there will someday be a hospital that is put together for autoimmune disease specifically so that when you go in you have all of the "ologists" in one place.

Becky Miller:  And, and they can coordinate with each other in real time, basically. That's we - I, because of me having cancer in the past, I had an experience with that and I actually had worked at a cancer center um literally just the year before I got breast cancer. And so I had the experience of having worked at a cancer center as well as being treated as a patient there, and the coordination - that is my dream as somebody with autoimmune diseases. If I could see that kind of coordination of doctors like I saw at the cancer center, all of them coming together to figure out a problem and see that for people with autoimmune disease, that would be incredible.  

Chelsea Streit:  Yeah, that sounds like a dream come true.

Becky Miller:  Yeah. Okay. So, one of the things that we talk about a lot on our podcast is we compare how being diagnosed with a chronic illness is kind of like a mountain climb. And uh it's a mountain that of course never goes away. But some days we're making steady progress. Maybe some days we're slowing down and taking in a view or two. And um, sometimes we're just pausing for a minute figuring out what our next step is. Can you tell us kind of what mountain you're on right now? And are are you climbing? Like are you in progress of climbing? Have you reached a good milestone? Or are you honestly just taking a break because you know you need to rest.

Chelsea Streit:  Um, yeah, that's a great question. Um, I, I think currently right now my biggest hurdle is is definitely having, having my thyroid out. Um it was it it was a a thing where they they had um found cancer in one side of my thyroid and they wanted to just take one side of my thyroid, and I said, "No, you're taking the whole thyroid." Um and it's a good thing I said that cuz the cancer that they actually found, you know, this the side of the thyroid that they actually found the cancer was actually on the opposite side. So, um, so that's. that was that was a pretty, um, big struggle having having my thyroid out and and and really I mean the surgery was okay, but but what's been really hard is I'm still currently dealing with the aftermath. Um, because they are having a lot of trouble g getting my thyroid levels right. So, I've I've I've I've been on the right dosage for some time and then my thyroid levels will get off again and then it's just so on on top of the fatigue from Sjogren's, I kind of feel like I have more fatigue from, from my levels not always being accurate. So, and that's that's been about gosh almost three years that I've, I've been dealing with not having correct thyroid levels. Um, so that's that's currently definitely my biggest struggle.

Um, and then I, I would say I, I would like to say I feel like my biggest milestone was was definitely recovering from my masectomy because that's that turned into a massive amount of complications after the surgery. Um cuz I, I, I had a I had to deal with quite of a bit of infections and and my implants rupturing and um I overall just had a really hard time healing and it was kind of just four years in and out of the hospital. Um, so I finally um, I mean it was it was a little while ago, but I, I find, I remember the, the, my first, I mean it wasn't like a massive hike, but I I remember I I went on this little like nature trail walk um for the first time after dealing with all of that. The night, and night and I honestly like cried, cuz it was just so I I've I I mean, you know, to anybody else it wouldn't be a big thing, but just after struggling so much with trying to heal and then being able to do something like a simple walk, it was just um a, a milestone for me. It was a real huge milestone for me. So, um and then yeah, I I'm always resting. Um, I, I feel like I, I just that's definitely one of my top priorities is is just to always make sure that, that, that resting is ,is a priority because if, if you don't rest, you'll definitely um, you know, pay for it later. And I tend to pay for it emotionally and physically. So, I always say if you know, if I'm in a mood, I either need to eat, sleep, uh, take a nap or shower. So...

Stacy Griffin:  Yeah, I think it's really important for us to remember to to prioritize our self-care and sometimes we just are so overwhelmed and so exhausted that that's a struggle. So, I'm glad to hear that you are granting yourself the grace and giving yourself some space to find a little bit of peace. And I love that you saw your walk as what I would have seen it as at certain points in my life, which is just a beautiful good thing that is finally able to happen because after a lot of difficult times, whether it's emotionally, but especially physically when we have a really rough time physically, to be able to have any kind of forward momentum feels amazing.

Chelsea Streit:  Yeah.

Becky Miller:  Well, and I was going to say I think sometimes as as people with chronic illness, we forget that it's okay to have smaller milestones. I know like I called my sisters I don't know what was it a week or two ago. I have had osteoarthritis in my knees since I was 18 years old, and I haven't been able to kneel or do anything like that properly in years. And I got my knees replaced last year, but because I also have lupus, it was a tough recovery. And I, I was so excited, because I called them the other days, and day and I was like, "Guys, I was like down on the ground and I was able to get up all by myself. Like nobody had to help me. I didn't even have to lean on the couch." And something that people just do every day that they would probably laugh because they take it for granted. Like you said, the little walk, whatever. people that have the ability to do that would take that for granted. But when you have chronic illness, you realize that those little victories are really important and it's totally worth celebrating them.  

Chelsea Streit: Yeah, absolutely.

Stacy Griffin: Yeah, I believe in celebration. All right, speaking of things to celebrate, let's talk about what you're being you've been doing with advocacy. Um, let's start with you were interviewed by some medical professionals before. How has that shaped the way that you tell your story and approach advocacy in your life?

Chelsea Streit: Yeah. Um, I think it's definitely shaped the way I told my story. Um, and, and, and as far as relation to the the advocacy, it, it's um I, I, I feel like it kind of uh, maybe gave me a little bit of a spotlight for my voice to be heard because um there tends to sometimes be a lot of uh, - in at least in my rare disease community - there sometimes tends to be a lot of focus on on people with with children and, and caretakers. and, and stuff like that. And there's certainly nothing wrong with that. But sometimes I think that the adults, you know, that are just kind of trying to look after themselves and, and there's not necessarily any children involved, they kind of tend to, to not maybe all the time get the same recognition as as people with um, children or young children.  

So I, I, I definitely felt like it amplified my voice as, as far as and, and also as far as you know neither of my parents having the genetic disease, and I was the first one with it. Like kind of how the diagnostic process can be for for somebody like that, and you're definitely more of a medical mystery cuz, cuz neither one of your parents have it. So, I, I definitely feel it was it was great to talk to a, you know, a specific P10 expert um, that that kind of uh, knew what I was talking about for once because it does tend to be so rare.

Sometimes a lot of doctors won't even know what it is. But um yeah, I definitely feel it it helps just in relation to um, maybe talking about the diagnostic process a little bit more and how that can be a struggle or more of a struggle for people with parents that don't have it.

Becky Miller:  Yeah. Um what do you think that because obviously I feel like patient voices are very important for not just general advocacy, but also how do you think um using your voice in these conversations uh, was something that maybe doctors and researchers that would be discussing these things wouldn't necessarily provide? How do you feel like patient voices can provide that level of advocacy or understanding that maybe a doctor or researcher would not be able to?

Chelsea Streit: Yeah. Um, I, I definitely feel very strongly that the emotional side of it, the the emotional aspects of, you know, going, you know, the emotional side of not knowing what's wrong with you, um definitely can, can take a toll. And and, um you know, and then and then once you do find out what's wrong with you, that can take even more of a toll. And you know, there there is a sense of relief there, but also there's not because you have an awful condition. But um you know and and then just bringing awareness to doctors or researchers that the emotional side of of having illness can can really kind of exacerbate the the physical side and and physical symptoms, because it's, it's, it's, it's amazing what stress can kind of do to the human body. So, I think I think maybe um having doctors kind of recognize that, that the emotional if you kind of make sure that they take care of the emotional side of it, it can help with the physical side somewhat. Yeah. At least in my experience. But, um yeah, I think that's definitely the the number one thing I would say.

And also um you know, you know, things like like transportation you know, can add you know, trans if you live in a rural area transportation to doctor's appointments can, can really have a massive effect on on your health and um, you know, you know, making sure that that the home life and you know, you being looked after whether you're looking after yourself or you have somebody look else looking after you. um, you know, really kind of plays a part in the in the big picture.

Stacy Griffin:  I would agree. I think that having um a way to have everything in your life come together for your good is really hard when you're out in the middle of nowhere or when you have doctors that don't understand you. There are a lot of challenges that I think we have. So, what is your favorite tool or strategy, one or the other, that you use to kind of get through these difficult times with some of the challenges that we have? Because we have all kinds of fun challenges we get to deal with. But what is your favorite tool or your favorite strategy?

Chelsea Streit:  Oh, um I love that question. Um, I think my favorite tool would um, would definitely be distraction. Um, and and you know, sometimes too much distraction may not be necessarily a good thing, but I'm the type of person that really tends to obsess and overthink and fixiate. So, you know, whether it's it's kind of waiting for test results or I'm nervous about this appointment or, or whatever it may be, I think I think distraction has always been my most helpful coping mechanism. So whether it's, it's trying to sit down for a two-hour movie and pay attention the whole time or, you know, go outside for a walk if the weather's nice or, or just kind of cuddle with my dog or or talk to my husband, of course. I think just it sounds so simple, but I think just trying to kind of keep your mind off of it has has done wonders for me.  

Chelsea Streit: Um yeah and, and then and I'm also um you know just kind of getting in touch with my artistic side whether that's that's drawing or or painting or or writing poetry or kind of expressing myself artistically is, has also really helped a massive amount I find. Um, yeah. And and not only my husband, but relying on my mother and, and stuff and just and just kind of talking, you know, if you're in the mood to also kind of talk it out. I think that's really important as well. And and um, you know, not keep it all bottled in.

Becky Miller:  I agree with that. I think those are all wonderful uh coping tools and you know with how we can deal with our chronic illnesses. So, one of the other things that we try to do on our podcast is look for the good things that we learn or the goodness that we discover because of our illnesses. And sometimes that's not always easy. But I think in your case, one of the really awesome ones that um, if you had not had Cowden's, you would not have found your husband. So, do you mind sharing a little bit about that story with our audience?

Chelsea Streit: Yeah, definitely. Like, yeah, I, I love sharing that story. It's it's one of the most beautiful things came out of something so kind of tragic. And um it was it was around it was right before COVID hit. I, I, I was kind of um struggling mentally with, with um, my illness. And he um, we were in one of those support groups on Facebook at the time, and he kind of uh he just offered to have a a phone call with me and um, and we just chit-chated and he was very supportive and helpful, because he's he's a pretty big mental health advocate as when it comes to illness himself. So he was very knowledgeable and, and making me feel better.

And then um COVID hit and then everybody was in quarantine. So we just kind of continued the video chats and you know one video chat turned into another and another, and then um, you know and then we obviously couldn't visit each other for for the longest time because of COVID. But, but once we were able to to visit each other, we went to a rare disease convention in San Diego. Um and then from there he came to to visit me for three months in New Mexico. And then another visit turned into another visit and we just eventually tied the knot and got married.

Stacy Griffin: That's fantastic. I love, love, love your story. I love your love story.

Chelsea Streit: Oh, thank you.

Stacy Griffin:  So, thank you for sharing that with us. All right. So, you mentioned that you're in New Mexico and you also have mentioned advocacy. So, here's my question for you. Can you share a little more information about your advocacy work in creating a rare disease advisory board in the state of New Mexico?  

Chelsea Streit:  Yeah. Um, definitely. Um, we have there's a a few a handful of people involved and, and my husband being one of them and we have meetings every month. Um, and we call ourselves the Zia Zebras and there's a, a Facebook um, group about it. But um but anyway, it's yeah, we're, we're basically just trying to get that established, because New Mexico is is in definitely in um, a health crisis. We have a, a pretty big shortage of doctors.

Um, New Mexico has a one of the highest rates in the country for, for medical malpractice. So, that results in, in providers having to pay out extra for their their medical malpractice insurance and then a lot of them don't want to do that. So, they move out of state. So, um I think um, trying to get that established um, you know, will will help rare disease patients in terms of dealing with, with kind of the poor health care system in New Mexico. Um, and then also, um, you know, I, I think going back to what I said earlier, just, uh, you know, making sure rare disease patients have, have transportation to doctor's appointments or, you know, um, New Mexico had, you know, tends to have um, things like wildfires and I know sometimes it's difficult for for disabled people to evacuate in those types of circumstances.  So, I, I think, you know, you can definitely kind of choose what, what, what a priority may be for your state and, and that can kind of go into to trying to get something like that established.

Becky Miller:  I think that's great, and so needed. I think as somebody, because I currently live really close to the Dallas Fort Worth Metroplex which obviously there's very good access to a variety of doctors and specialists, but all three of us, you know that co-host here, as sisters we grew up in rural southeast Utah and if you wanted to see any any kind of specialist pretty much you were driving at least like four hours.

Chelsea Streit: Oh yeah.

Becky Miller: Um, and so having seen that comparatively, I totally see where you're coming from and I agree 100%. Like it is really wonderful work you're doing. So good luck.

Chelsea Streit:  Oh, thank you.

Becky Miller:  Best of luck with that.

Chelsea Streit:  Oh, thank you. We're making really slow, slow progress, unfortunately, but we're trying.

Becky Miller:  Hey, progress is progress.

Chelsea Streit:  Yeah.

Becky Miller:  It's more than was going on before, so...

Chelsea Streit:  Yeah.

Stacy Griffin:  Sometimes in life, the things we do take, take some time to get going. I mean, autoimmune disease is more prevalent than Cowden's, but here's the thing that I don't think a lot of people realize, Just because fewer people have it doesn't mean they need less help.

Becky Miller:  Um, we are so happy you joined us today, Chelsea.

Chelsea Streit:  Thank you for having me on.

Becky Miller:  Your story remind us reminds us all that advocacy really does start with one voice and that lived experience is powerful medicine.  

So also to our audience, thank you for joining us on this episode of Autoimmune Adventures. We are very grateful to have you as part of our community. If you enjoyed today's conversation, please like, subscribe, and share it with somebody who might need a little encouragement on their own journey. You can find more resources, past episodes, and inspiration at autoimmune adventures.com.

Remember, you are worthy of joy. Your disease does not define your life. You do.

HELPFUL LINKS:

New Mexico Rare Disease Facebook Group: NM Rare Disease - https://www.facebook.com/share/g/1BPpH8Jwy6/