Today's Healthcare Challenges: Daniel's Story of Morphea and Using Telemedicine as a Solution

In this special episode of Thriving with Arthritis, Dr. Diana Granita, a seasoned rheumatologist, sits down with Daniel, a 32-year-old man who shares his personal journey of being diagnosed with Morphea, a localized autoimmune disease. 

Despite having no prior medical issues, Daniel experiences the challenges of navigating the healthcare system. 
From noticing initial symptoms to receiving a diagnosis and finding the right specialist, Daniel opens up about the anxieties and hurdles he faced. 
The discussion also highlights the importance of telemedicine, transparent pricing in healthcare, and the pros and cons of seeking medical information online. 
This episode offers valuable insights and advice for anyone dealing with autoimmune diseases, emphasizing that quick access to specialist care can make a significant difference.

Transcript

**Dr. Diana Girnita:** Welcome to Thriving with Arthritis, the podcast that empowers you to live a better life, despite all the challenges of arthritis and autoimmune diseases. I am Dr. Diana Granita, your host, and a rheumatologist with over 20 years of clinical and research experience. 

Today, it's a special episode where one of my patients was so nice and so kind to share his story. Many of the stories that you're going to hear are about discovering a diagnosis, discovering how to get to a doctor, and what the process is like when you interact with our current medical system—from challenges to finding a doctor, to challenges to finding a diagnosis, and also to getting the right treatment. So today, I have the great pleasure to have here Daniel, who is a 32-year-old gentleman. He's going to tell us his story. 

**Dr. Diana Girnita::** Daniel, welcome.

**Daniel:** Great. Thank you for having me.

**Daniel:** So yes, my name is Daniel, I go by Dan. I'm 32. I've lived in Southern California my whole life. Never really had any medical issues. So this was all new to me. So whatever Dr. Granita wants me to start with my story, just let me know, and I'll...

**Dr. Diana Girnita::** What kind of symptoms have you had, Daniel? And because you were a healthy gentleman before this happened to you, tell us a little bit about your story, how you discovered the new symptoms, and what did you do about it?

**Daniel:** Yeah, so I've always been pretty healthy. I played sports growing up, got banged up a little bit, but nothing serious. So I was under the routine care of a dermatologist who was great during this whole process as well. I had hypertrophic or keloid acne scars on my shoulders. So I was fortunate in that sense that I already had a healthcare professional. I slowly started noticing little spots on my skin, thought they were nothing, thought they were some type of scar that I wasn't aware of. And eventually, when I saw that I was missing hair in some of these spots and they were becoming thickened, I started doing some Googling, which also you probably shouldn't do too much of. I ended up reaching out to my dermatologist, got in a couple of months later for an appointment, knew where he was going with it, and ultimately did know where he was going with it, which resulted many months later in a biopsy and a diagnosis of morphea. Started Googling it again. Probably not the best idea to Google things. Probably better off just going directly to a healthcare professional. I was fortunate enough to already be under the care of one and then also reaching out to Dr. Granita, who helped me a lot.

**Dr. Diana Girnita::** So because you are mentioning Googling, I will say that this is the problem of many patients and that comes from multiple reasons. One is the fact that patients have to wait many months until they see a specialist. So that was also your case. Like you said, before you reached out to your dermatologist, it was very difficult. Many months until you got the appointment, and it was other months until you got a biopsy. So Googling your symptoms, it's a curiosity that I always understand from the patient side. But what did you discover when you Googled your symptoms? What did Google say? I know that you are reaching out to YouTube as well.

**Daniel:** So I'm a human, so we want answers quick. We want things fast. When I got some blood work back, biopsies back, my dermatologist said, yep, I think it is what I thought it was. And I'm 99 percent sure. And everything looks good. We're still going to have you go to a specialist, in this case a rheumatologist. I know everyone has a different health insurance and healthcare position. Seeing specialists—I'm in Southern California in the United States—that can mean many months, even if you're in a very good position. Position good insurance to see it. It could take a long time. So obviously I started doing a lot of Googling of symptoms, and unfortunately, for various autoimmune things and things that rheumatologists work with, it's not very clear pictures. A lot of the symptoms can be very different. In my case of morphea, the biopsy and the blood works don't actually differentiate between a localized form, which is what I've been diagnosed with, and a systemic form. And they are greatly different. So I caused myself a tremendous amount of anxiety of what ifs and catastrophizing. And of course, if I had just refrained from doing that and solely taken my information from the specialists, which were my dermatologist and Dr. Granita, I would have had a much simpler time with it. I wouldn't have wasted my time with various internet forum treatments that people are supporting. Even when you go to things like PubMed, for my case, the Square Dermat Foundation supported forums, there's a lot of information going around, some contradicting others. I got to YouTube where there's a lot of professionals on there that wouldn't match up with some of the things I was seeing on other forum-based sites, which just created even more anxiety. So I'm thankful how I ended up getting to Dr. Granita was, like I said, I wanted an answer quickly. I wanted a professional who knew what they were doing very quickly. And from the time I was recommended by my dermatologist to go see a rheumatologist, I think it was like 36 hours from that point to when I'm on a call with Dr. Granita, rheumatology on call, getting some of my answers that I was searching for. So for me, it was just very much a convenience thing.

**Dr. Diana Girnita::** For those of you that do not know, let's make an introduction to morphea and systemic sclerosis or scleroderma. So systemic sclerosis is an autoimmune disease that can affect the skin, but it can also affect multiple other organs just by the name. Systemic sclerosis—you can figure out that there is sclerosis, meaning thickening of the skin or parts of the skin, and there is systemic involvement, which means that other organs from the heart, the lungs, and even kidneys can suffer from this autoimmune disease. Now, morphea, on the other hand, it appears to be also some sort of autoimmune disease, but it's not systemic. It's just the involvement of small parts of the body. Sometimes it can be linear morphea, sometimes it can be just patches of skin that will get thickened. We don't really know what is causing morphea, but we do know that it happens sometimes in patients that are exposed to a certain chemical, to a certain medication. There are some infections that were correlated with that, but the reality is that we don't really know. When a dermatologist finds out about morphea, it's always going to request a rheumatologist to weigh in to tell you if there is any systemic involvement or if that's just a localized process. For that, you need a lot of blood work, a lot of specialized blood work. And like you, Daniel, you are saying, not everybody understands what kind of blood work is needed and how to look at the diagnosis. So you actually—is it correct that you saw me on YouTube talking about scleroderma, and then you reached out to me because you realized that I'm very close to you. But on the day where you wanted the appointment, I was not available because I see patients in person, but most of my patients are through telemedicine. So in a matter of 36 hours, we were able to book an appointment and we were able to jump on our first call. How was this process of booking the appointment from the time that you found out? How did you decide that you wanted to come to me? I know you see a lot of doctors on the internet or on YouTube. How did you decide that you wanted to come and be seen? And how was that process for you? Was it hard to make the appointment, to fill out the forms? Can you explain to us?

**Daniel:** Yeah, so I was fortunate enough to be in close proximity to your office, but that was just by luck. I believe some of them are publicly traded large corporations that do telemedicine. The problem I had with those is it's very general. When I was looking at YouTube and hearing all these different specialists, including Dr. Granita, speak about it, I'm like, how do I talk to one of these specialists without spending months waiting for referrals and getting appointments and things like that? And then that brought me to Google where I found you again as being on call. So for me, that was the perfect option. I was like, wow, I get to actually speak to someone, ask questions with a specialist that I need, not just a random specialist at a large corporation who’s going to say, I'm a cardiologist, so I can't help you with morphea. Your online reach and your specialty and actually being on call was exactly what I needed and was the help I was searching for. The process as I recall, super easy, just an online calendar, booking an appointment, filling out forms, which is the same as any doctor I've ever been to; you have to give your medical history and everything. The online platform, sending each other messages, uploading my blood work, uploading photos, things like that— all very seamless. The telemedicine portion, our first appointment, we had good cameras. It felt like any normal doctor's appointment. It wasn't like a phone call or generalized; it was very specific to me and exactly what I needed. At the end of the call, you presented me with different options, different blood work orders I could go take, just like any other doctor, walk into a Labcorp or a Quest. So to me, it was very similar to a normal doctor's appointment, which I know other telemedicine options aren't going to be like that. It was just very specific to me, which I appreciated. Gave me a lot of peace of mind, gave me the answers I was looking for. Really, especially for such a niche specialty, it was a great option for me. Very simple. And then, of course, I was fortunate enough to meet you in person at your office. So that was great that there were so many options, whether telemedicine or in person. It was quick, easy, and it just, it gave me peace of mind and all the answers I was looking for.

**Dr. Diana Girnita::** The first appointment ended up with ordering some blood work. We had to wait until the blood work was back to us, and then you made an in-person appointment. How was that different? Was there any difference between seeing me in person versus the telemedicine? 

**Daniel:** Both were nerve-wracking for me because I was wondering, "Okay, am I getting a good answer? Am I getting a bad answer?" The first appointment, I've even seen advertisements for, and I think telemedicine has its place, right? I wanted a quick appointment to just get the process going. Everything I was reading about these conditions is that time is important and getting treatment is important. So for me, I was looking for, "Can I talk to a specialist quickly?" Then the big difference when you actually get into the office and stuff, I think, that's a good progression, a good next step, because then that made me feel at the end of that, "Okay, we talked about it the first time; we got more blood work; you got to examine the actual spots, see me in person, listen to my heart, listen to my lungs." So that was like the finale. So I think it was the right progression. I wouldn't want to have to wait two or three weeks for that finale appointment. I liked having the telemedicine appointment with you first and then having that final appointment. So both were different, but both were necessary in my process for kind of putting the morphea chapter behind me.

**Dr. Diana Girnita:** I have to tell you that you are perfectly right. That's what I tell patients. Many times we can solve a lot of things with the first appointment. We can speed up the process. We can order everything that is needed. But sometimes the second appointment in person is valuable because we can correlate the signs and symptoms once again. I can do the physical exam and I can reassure myself that I'm doing the right thing for the patient, but also reassure the patient. Now, I know that you mentioned that you have great insurance, and despite having great insurance, navigating the medical system can be a challenge. And as far as I remember, you took advantage of our cash prices and our transparent prices for blood work. Correct me if I'm wrong, but do you have a high deductible plan? Were you trying to avoid the hassle with the insurance? What was your thinking when you accepted or when you were looking for our transparent cash prices?

**Daniel:** So for me personally, it was definitely a timing thing, right? I've been at this for a while; I wanted to get a move on, but I did have experience before with—there are a lot of different platforms online to order blood work. I know I have a brother who has—I wouldn't say a high deductible, but just a normal basic insurance plan where there is a deductible. And I know I've read this from other people: you can go online and order your blood work, general wellness blood test, for cheaper than it would be if you went through your primary care physician and went through insurance. So I was already aware that there were other options out there than just strictly going with what your insurance has to offer. So for me, it was a timing thing. The pricing was transparent; I was not surprised by anything. Everything was very upfront. I know this is subjective, but to me, it was very reasonable. I know the various costs of healthcare, even when you have insurance, there are substantial costs to healthcare. To me, it was reasonable. And again, for something— it turned out for me being okay. There are many other serious medical conditions that rheumatology deals with. So for a lot of people, including me, you're going to want a second opinion. So even if you go through insurance, you're like, "Is there anyone else I can talk to?" I think it's a great option as well.

**Dr. Diana Girnita::** And it's always good to know what your options are. It's good to have the insurance for catastrophic situations, but it's also good to evaluate what are the prices, what are the cash prices. And if you can actually buy a service for a cheaper price than it's going to go through your insurance, why not? It's your option. You have that option; nobody chooses for you. And the other thing is that many patients, they think or they assume that their insurance will pay for their blood work or for an imaging test, but then they will find out later that they will get that surprise bill, which can be thousands of dollars, and that cannot be reversed. So it's very good to know, and even with insurance, ask for the cash price and ask for the price that you will have to pay with insurance. Compare, and you choose, because we do that every day for buying a product on Amazon. And I know health is not something that you buy, but for a service like getting laboratory services, that's not something that should be hidden to us. That's something that should be open, and we should know how much a laboratory test costs or an MRI will cost because that gives us the options to compare, like we do for everything else. We're in a time-sensitive situation, and I understand that's the situation that many patients will have, but going through this process, would you recommend to others a telemedicine option, and would you recommend us?

**Daniel:** Yeah, for the situation I was in, where it's not an emergency situation and you have to get somewhere immediately, for trying to nail down a diagnosis, get some peace of mind, actually figure out what's going on... The hard thing for me too was as months go by, wondering, "Am I doing something wrong? Is there something I should be doing?" For getting those quick answers, for me, this was a great option, the telemedicine, especially for getting the ball rolling on finalizing that diagnosis. It was great for me. For you specifically, I would highly recommend it. It was quick responses, great communication with the online system you use with messaging and the flow of information.

**Dr. Diana Girnita::** Thank you. For me, it was conveniently located as well. So having that option of online and in person, I have limited experience in the healthcare system because I've been fortunate enough to not have too many medical issues, but comparatively, yeah, it was a great experience. Felt very comfortable, but mostly just, I appreciated the transparency and the flow of information. 

**Dr. Diana Girnita:** With that, Daniel, I would like to thank you very much for taking the time to educate others about your experience and about the fact that you went through a medical problem that could be very stressful. I appreciate the fact that you shared your story. You are open to helping others because that's what it's all about: to give that peace of mind to other people that if they need help, there are specialists like me that can be available and can help them when they need it the most. Thank you.

**Daniel:** Thank you very much.

**Dr. Diana Girnita::** And I wish you the best of health. And with that, I would like to close this episode of Thriving with Arthritis, where I educate people about autoimmune diseases and arthritis, and I share with them the stories of my patients, but I also share with them the tricks and tips and options that they have in the current medical system. Have a wonderful day.

**Dr. Diana Girnita:** Thank you for joining Thriving with Arthritis podcast. If you found today's episode valuable, please subscribe. Consider leaving us a review as your feedback helps us improve and reach more people like you. Remember, you are not alone in your journey with arthritis and autoimmune diseases. Together, we can learn, grow, thrive, and not just survive. Stay tuned for our next episode where we will dive deeper into more topics that matter to you. Until then, keep thriving!