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When Symptoms Don’t Add Up: The Overlap of Lupus and ITP
70 Plays25 days ago
In recognition of Lupus Awareness Month, this episode explores the important connection between lupus and immune thrombocytopenia (ITP), two autoimmune conditions that can sometimes overlap. Host Barbara Pruitt is joined by guests Cathy Aldama and Beth Siegelbaum, who share their personal journeys to diagnosis, the challenges of managing both conditions, and how their experiences have evolved over time. From unexpected symptoms and second opinions to treatment decisions and day-to-day realities, their stories highlight just how different each path can look. You’ll also hear powerful insights on self-advocacy, working with the right doctors, and why education is key to living well. Whether you’re newly diagnosed or have been navigating ITP or lupus for years, this conversation offers reassurance, perspective, and practical takeaways you won’t want to miss.
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Transcript
Discovery and Diagnosis of Lupus and ITP
00:00:00
Speaker
Anytime anybody finds a lump, they get nervous. I went to this doctor and he basically brushed it off and said, oh, it's you know it's just fatty tissue and it's nothing you're ever going to die from.
00:00:12
Speaker
so okay, fine. So I left and I felt okay about it. And then I found another lump on the other arm. I said, I think I need a second opinion. So I went to a different doctor and he said, let's biopsy this.
00:00:29
Speaker
And that's how I got my lupus diagnosis.
00:00:34
Speaker
Welcome to the PDSA podcast, Bruised But Not Broken, Living with ITP. The diagnosis of a bleeding disorder like immune thrombocytopenia may leave you wondering, how can I really live my life with ITP?
00:00:48
Speaker
PDSA's podcast, Bruised But Not Broken, Living With ITP, brings empowering stories, the latest research and treatment updates, lifestyle tips, and answers to the real-life questions the ITP community is asking.
00:01:02
Speaker
Here's your host for this episode, Barbara Pruitt.
Understanding Lupus and Secondary ITP
00:01:13
Speaker
Thank you for joining us today. At the PDSA, we recognize May as Lupus Awareness Month, an acknowledgement of the connection between lupus and immune thrombocytopenia.
00:01:27
Speaker
While most individuals are diagnosed with primary ITP, some have secondary ITP. in which another autoimmune condition, such as lupus, plays a role in their diagnosis.
00:01:44
Speaker
Approximately 2-3% of patients with ITP go on to develop systemic lupus arithematosus, also called SLE or lupus.
00:01:58
Speaker
While most ITP cases remain primary, the risk of developing lupus is significantly higher in females and those with a positive anti-nuclear antibody known as an ANA test.
00:02:15
Speaker
Lupus is a chronic disease that can cause inflammation and pain in any part of your body. Lupus most commonly affects your skin, joints, and internal organs like the kidneys and heart.
00:02:32
Speaker
Because it affects many parts of the body, it can cause a lot of different symptoms.
Personal Experiences: Kathy and Beth
00:02:40
Speaker
Well, today i have two women as guests that both have ITP and lupus.
00:02:48
Speaker
I want to welcome Kathy Aldama and Beth Siegelbaum. Hi, Barbara. Thanks for having me. hi Barbara. Good to be here.
00:02:59
Speaker
Well, thank you both of you for joining us today. I know that this conversation will be educational for me as well as our listening audience and um maybe enlightening for another individual that might have ITP and lupus.
00:03:17
Speaker
So let me start off by asking both of you, when was your ITP diagnosed? How long ago? My ITP was diagnosed back in October of 2006. So it's almost been 20 years.
00:03:34
Speaker
I was actually diagnosed at the same time as my lupus diagnosis. Wow. Both at the same time. Okay. What about you, Beth? Well, I was diagnosed with ITP probably in the mid-90s, around 1995.
00:03:52
Speaker
And that was long after my lupus diagnosis, which was in 1977, I think. So it was a long time.
00:04:03
Speaker
So you were suffering with lupus for 20 years before they figured out you also had ITP. Right. In your case, Kathy, I mean, you were diagnosed with both at the same time. Were there certain symptoms that you were experiencing that made them think you also had lupus?
00:04:22
Speaker
For me, it was like I really didn't know that anything was really wrong with me or going on except for extreme fatigue. I had four kids, I think at that time they were ages 11 to 18. And so I was constantly running around taking them, you know, to school, picking them up, taking them to activities and things like that. And I just thought, gosh, you know, I must just be exhausted from that.
00:04:47
Speaker
But I started taking naps. And it just seemed like that fatigue never went away. I just even felt more tired. And so finally, probably after several months, my husband goes, you know, maybe you need to just go get checked out and make sure everything's okay.
00:05:02
Speaker
So I started off with my OBGYN and she ran just complete everything. Just, she goes, let's just make sure everything is okay. And at first my platelet count came back low.
00:05:16
Speaker
So she goes, you know, a lot of times there's errors with that. Let's, you know, come back in and we'll run another CBC, see what your platelet counts at. It was even lower. So it went from like down to 35, I think at the time.
00:05:29
Speaker
But with all the other results from the blood work, she was suspected something more was going on. And I think she was thinking it must be lupus. So she referred me to a rheumatologist.
00:05:43
Speaker
I went to him He ran some more blood work, examined me, asked me a lot of questions and went through all the criteria from the American College of Rheumatology to see what symptoms I had, and from there I had enough of everything for him to diagnose me with lupus. But then the question was with the low platelet count, what's going on with that?
00:06:07
Speaker
So I was referred to an a hematologist oncologist. Right. Pretty shocking to get all this news at one time. Yeah, i I would think so. You got the double whammy. Yeah.
00:06:18
Speaker
And Beth, what about you? You had lupus diagnosis first. What were your symptoms? So I have a different kind of lupus. I have what's known as lupus profundus or lupus paniculitis.
00:06:32
Speaker
and And ah my first symptom was a lump on my upper arm. Anytime anybody finds a lump, they get nervous. I went to this doctor and he basically brushed it off and said, oh, it's, you know, it's just fatty tissue and it's nothing you're ever going to die from.
00:06:50
Speaker
So, okay, fine. So I left and I felt okay about it. And then I found another lump on the other arm. I said, I think I need a second opinion. So I went to a different doctor and he said, let's biopsy this.
00:07:08
Speaker
And that's how I got my lupus diagnosis. Okay. So it was with the biopsy. Yes. And that was... I'm sure a definite diagnosis then. And did you end up seeing a rheumatologist for your continuation of care or what happened after that?
00:07:25
Speaker
Yeah, not right away. So um kind of funny enough, ah we just decided to not do anything about it. And my doctor said, we'll treat it with cautious neglect.
00:07:39
Speaker
That's an interesting term. Yes. So ah that's what we did for a couple of years. And then I continued to get more of these lumps and they weren't just in my arms, they were in my buttocks and eventually so my face.
00:07:56
Speaker
And we still were doing nothing. And then I went on a vacation to the tropics and it was recommended to me that I take some anti-malarial medication which I did, and oh my goodness, all these lumps started going away. And I didn't make the connection right away. i thought maybe it was the sun, even though I was told to stay out of the sun.
00:08:21
Speaker
But then I did a little reading and found out that anti-malarials were being used to treat certain symptoms of lupus. So that's when I ended up going to a rheumatologist and got switched to a different antimalarial, which is a plapunil hydroxychloroquine sulfate. And that was in 1984.
00:08:45
Speaker
and I've been on it ever since. Wow. And has that been successful for Yes. ah Yes.
Impact of Lupus Medication: Beth's Story
00:08:53
Speaker
So you've it's been able to keep your symptoms down or do they consider you in remission? I guess not if you continue to take your medication.
00:09:04
Speaker
No, because I still have inflammation and i do get some new like skin lesions once in a while. i look Most recently I've got lesions on the top of my head now, which is lovely because I know everybody can see them. But yeah, so I still take the medication.
00:09:24
Speaker
Kathy, are you on any medication for the lupus? I am. I am also on hydroxychloroquine or Plaquenil. And I also take my Fortick, which is mycophenolic acid, I think is what it's called.
00:09:39
Speaker
But yeah, I take both of those. I've been taking them since I was diagnosed with lupus. I tried after about 12 years to go off the medication because I had been doing well, except, you know, with my ITP.
00:09:54
Speaker
And so I thought, well, maybe I don't need to be on it. So my doctor was in agreement and said, you know, why don't we try? you can go off of everything. And i was good for about a year and a half, two years.
00:10:06
Speaker
And then right at the start of the pandemic, I ended up with iriti which is inflammation of the iris. wow One of the most painful things i have ever gone through and not being able to get in to see a doctor because everything was shut down.
00:10:23
Speaker
Trying to get diagnosed over the phone was not good. And I was finally able after probably several weeks to get in to see a doctor. And that's when I got the proper proper diagnosis. But that was when I realized I did need medication.
00:10:37
Speaker
And so after that, I did go back on both of those medications and inflammation has been at bay since then. So I know the medication is doing something.
00:10:48
Speaker
Well, for a year and a half, though, you weren't needing to take anything. Yeah, everything was fine until it wasn't. Yeah, of course.
Prioritizing Health Concerns: ITP vs Lupus
00:10:57
Speaker
And Beth, have you gone off medication at any time or have you stayed on it continually?
00:11:03
Speaker
The lupus medication, I did go off of it at one point for about, I don't know, six months or so. And then all the inflammatory markers increased. So we just decided to go back on.
00:11:19
Speaker
When I went off of it, though, was right after i was diagnosed with the ITP because they said that any kind of quinine drug is not good for ITP.
00:11:32
Speaker
But my rheumatologist said to me, Beth, how much worse could it be? Your count is already 4,000. So I said, good point.
00:11:42
Speaker
And I went right back on. So you went back on the ah hydrochloroquine? Is that it what it is? Hydroxychloroquine. Now, for both of you, since you have both ITP and lupus, what is your main concern? Is one more concerning than the other?
00:12:00
Speaker
kathy Well, for me, because it's always been more of the struggle with the platelet count, I've always felt like the ITP is more my concern. But as I'm getting older and more things are happening and stuff, my rheumatologist actually said to me few months ago, he said, you know, we we haven't really been addressing the lupus side because there really hasn't been anything that we needed to talk about or discuss about it.
00:12:27
Speaker
But as I'm getting older and more things are happening, he's starting to say, you know, I guess we need to really think about the lupus side too, not just the ITP side.
00:12:39
Speaker
So, you know, we're kind of getting into little bit more conversations about the lupus. Yeah. Okay. I get it. How how about you, Beth? What do you feel is the most concerning?
00:12:52
Speaker
Oh, definitely the ITP. For me, the lupus is kind of a non-issue. It's kind of affected my appearance and I don't like that, but it hasn't affected anything else. And i don't feel like it's endangering me in any way. So it's just sort of kind of almost in the back of my mind. I do see my rheumatologist regularly, but it's basically just the let's check your blood work. Okay, things are the same. Keep doing what you're doing. See you next time.
00:13:20
Speaker
With the ITP, it's been a lot trickier. In the beginning, when I was first diagnosed, there weren't some of the drugs out that are out now.
00:13:30
Speaker
And I went through all kinds of different treatments and Chinese herbs included. and um you know, nothing was really ideal.
Managing Symptoms and Medications
00:13:43
Speaker
Prednisone worked, but my bones were already in bad shape. so it wasn't a long-term option.
00:13:50
Speaker
IVIG worked, but it was very inconvenient and time-consuming, and it worked less and less as time went on. So when the TPO drugs came out and I tried them, they worked for me. So I have been on them ever since, and it's still a little bit of a challenge because my counts bounce all over the place. So we're constantly increasing my dose and decreasing my dose and increasing decreasing.
00:14:22
Speaker
It's still a challenge, but um it's workable. So your ITP is your main concern also? Right. It's mainly my concern because I feel like something serious could really happen and, you know, kind of don't want to have a stroke or a bleed out or anything. And that's why it's more of a concern.
00:14:46
Speaker
Sure. i get it. I was doing a bit of research prior to the podcast and a word that kept coming up was lupus flare. Are either of you familiar with that?
00:14:57
Speaker
Yeah. Yeah. What is it that happens during a lupus flare? I can't say from my personal experience because things have been very even for me. Okay. But some people have periods of time when the inflammatory activity is higher and they feel sicker and then they have periods of time where things quiet down and everything's okay for a while.
00:15:23
Speaker
You know, it's kind of exacerbation, remission. Right. Have you experienced that, Kathy? You know, I hear and I'm very familiar with that term, but I have to say, too, that I really don't think I've had like a real flare like some people might have.
00:15:42
Speaker
I know there's times where i think, well, maybe it is a little bit of a flare because I get even more tired. kind of get the brain fog and things like that and just maybe more joint pain, but it's never been anything that, you know, has been severe for you.
00:15:58
Speaker
There are those times too where it's like I'm laying in bed and I think, I don't know, somebody yelled fire. Maybe I'm not going to be able to get up out of bed. because I'm just so tired. But other than that, there hasn't been anything like really serious with my lupus, except the iritis.
00:16:15
Speaker
I know that, you know, lupus is an inflammatory disease process. And with ITP, we can't really take anti-inflammatories. Are there Any medications or treatments that your doctors have recommended if you are having a lot of you know discomfort? I mean, do they also talk about the anti-inflammatories as not being something that is an option?
00:16:40
Speaker
As far as like the NSAIDs and things like that, that they want me to stay away from those things, but... like the Plaquenil, the hydroxychloroquine, that is actually considered, I think, an anti-inflammatory medication. Okay. So yeah, that helps keep everything at bay.
00:16:57
Speaker
And then ah like for me, I take that mycophenolic acid, myfortic, which is immunosuppressant. So it's supposed to help me too. But, you know, I do have to be careful too about getting sick and things like that. Because when I do get sick, even a cold, my platelet count really goes down. And twice I've been hospitalized because of my platelet count being so low. And all I had was cold.
00:17:21
Speaker
That happens to a lot of us. When you get a virus, your counts can really dive, which is not good. Now, what kind of things do you pay attention to in your day-to-day life? I mean, are there things that are on your mind that make you want to pay specific attention to something going on that would lead you to think that you're maybe running into flare or your lupus might be showing its ugly head again or something?
Advocacy and Learning from PDSA Conferences
00:17:53
Speaker
Not for me. It's more just the keeping an eye on where I think my platelet count is at and just checking my body over and making sure I don't look like I've got petechiae all over bruising and things like that. But as far as the lupus, I don't really think about that and, oh, I might be flaring. And I always think it's kind of funny because the fact that being diagnosed with lupus, they consider that your primary autoimmune disease.
00:18:22
Speaker
And then the ITP, which I consider the bigger concern, is still just considered secondary. So it's just sometimes it's just like, to me, it just doesn't really make sense because I feel like my ITP should be my primary thing because that's my big concern.
00:18:37
Speaker
But it doesn't work that way. I have a feeling you feel the same way, Beth. Exactly the same way. i I could have said those exact words myself. Now, I know that both of you have attended many PDSA conferences. Have you ever had the chance to meet anyone else at one of the conferences with lupus and ITP?
00:18:59
Speaker
I think I might have spoken to someone who had lupus and ITP, but I don't really remember a whole lot about the conversation. Yeah, I never Well, again, it's just 2% to 3% of people with ITP develop lupus or vice versa. So it's not a large amount.
00:19:20
Speaker
think I've seen like on the PDSA, the Facebook page, there have been people, several people that I think have when I've been on, that have mentioned they have lupus and ITP.
00:19:31
Speaker
Yeah. Well, this conversation might be directed... Specifically towards them then to learn a little bit more about it. If you had some advice to give to people with ITP and lupus, what would that be?
00:19:48
Speaker
Beth, can you think of that? So my only advice is to live as fully as you can. you know, if you have limitations, obviously you have to live within those. But me, I just don't let it slow me down.
00:20:05
Speaker
That's great advice. Kathy, do you have any suggestions you would give? That's a great way to think. I think the other thing that I have learned, having been diagnosed with both of these things, is you have to be a big advocate for yourself.
00:20:21
Speaker
Because nobody else is going to be looking out for you the way you can. And you need to do as much research as you can to make sure you're getting the proper care that you need.
00:20:31
Speaker
Because I wasn't always like that. Because when you're healthy and you're feeling good and you're younger and stuff, it's like it's not something that you really think about. And then you realize it's like, you know, i think when I started going to the PDSA conferences is when I really learned that my doctors don't know as much information as the doctors, the medical advisors at the conference, as much as I'm learning at the conference. And so going back and talking to my doctors, they were just like, you know, so what did you learn this time and things like that.
00:21:03
Speaker
And I think That is just so important because when you hear other people's stories and stuff too, nobody's stories are the same. And when you think, you know, some people, the first thing they did was have a splenectomy.
00:21:16
Speaker
Well, we know now it's like, that's not the first thing that you want to do. But then even for me, i was on because being diagnosed back in 2006 too, there weren't those FDA approved ITP treatments.
00:21:29
Speaker
And so I went through a lot of stuff too. And, you know, the only thing that would really get my numbers up and keep them up was prednisone. So having been on prednisone for 10 years or a little bit over 10 years, it was just like, you know, finding out that should never have happened.
00:21:46
Speaker
So, you know, you just really have to learn everything you can as much as you can to help yourself. Well, I think that is something that can take away a lot of the fear and anxiety when you're diagnosed with not just ITP or lupus, but anything.
00:22:03
Speaker
If you learn as much as you can, if you educate yourself about it, you will know what your red flags are, what to look out for. And if you if you're confident in knowing those parameters for your lifestyle, it helps you to lead an active lifestyle because you know what to look for.
00:22:24
Speaker
So that's why education and like things like the conference are so important to all of us. Because like you said, Kathy, you go back to your doctor and tell them what you found out. I do the same thing. I'm sure Beth, you do too.
00:22:37
Speaker
I think it's too being able to have that relationship and being comfortable with your doctor and knowing your doctor will listen to you also, rather than having a doctor who's going to tell you this is what we're going to do Some doctors may not care how you feel and what your opinion is because they're going to follow x y and z when you want to do a b and c So I think it's having that relationship where you know that your doctor cares enough to listen to your opinion and discuss your options.
00:23:06
Speaker
Exactly. Beth, do you have that relationship with your doctor? So I think that's really good point. And I am now on my third hematologist.
00:23:17
Speaker
My first one was wonderful. she um saw me through the the beginning of everything and all those crazy... things that I said I wanted to try. And she was always right there with me and, um you know, said sure, why not? Let's try it and all that. And then I got a doctor who didn't want to listen to anything I had to say. I would tell him that I came back from the PDSA conference and he was like, oh, you know, some support group.
00:23:48
Speaker
He didn't want to hear about it until one day he came back and said, oh, I just got back from the ASH conference and there was this guy there. he He's ah an MD and a PhD and he had all this great information about ITP.
00:24:03
Speaker
And it turned out Am I allowed to say names? Yeah, sure. So it was um Dr. Cooter. And I had brought him some information from Dr. Cooter in the past, and he refused to listen to me and said, I can't just listen to any old doctor.
00:24:23
Speaker
Now I have a third doctor. And he's like, oh, no, I never heard of PDSA. I think I need to learn about it. And oh, what did what did you learn? And I'm much happier with that attitude.
00:24:35
Speaker
That's great. It's important to find a physician that you can really communicate well with. And I'm happy that in medical school now, they're really enforcing shared decision-making.
00:24:48
Speaker
So it's not, I'm going to tell you what you need to do, but we're going to discuss the options and together we'll come to a decision. That's a much more humane approach. And I think the this is what you have to do approach is a bit archaic in a lot of ways. And it definitely doesn't help the patient feel any better. They're just getting pushed around.
00:25:08
Speaker
Their voice isn't being heard. Well, I appreciate both of your attitudes. I have to say you seem to be very positive. And I think the fact that you're well-educated about your conditions, that I'm sure that helps a lot with your positive approach to life.
00:25:26
Speaker
Do you think so? Totally. Yeah. Not always happy and positive, but for the most part, you try. Yeah. Right. I mean, I know myself, life is not all sunshine and rainbows.
00:25:37
Speaker
Sometimes we have pity parties, but I think anybody, even without ITP or lupus, yeah that's life. That's life. But the the key is to not let it drag you down on a regular basis and you know educate yourself and go on with your life and you do the best you can. And you look for the enjoyment. You look for the rainbows and sunshine, right?
00:26:00
Speaker
Definitely. Right. I keep my glass half full. Very good. Very good. that's That's a very good attitude. I agree with that 100%. So anything else you all would like to share before we sign off?
00:26:15
Speaker
Anything on your mind that you had been perusing to share with our audience?
Doctor Communication and Autoimmune Management
00:26:22
Speaker
I did just think of something else. The fact that if you do have more than one autoimmune disease and having different specialty doctors,
00:26:31
Speaker
that I think too, it's really helpful if your doctors work together. Because like for me, my rheumatologists and my hematologists, oncologists, you know, they're aware that I have these, you know, two different autoimmune diseases.
00:26:48
Speaker
And a lot of times, with your medications and your treatment options. It's like my rheumatologist will look at the different options available for me and then say, well, you know what?
00:26:59
Speaker
Maybe we'll try this first because it could be beneficial for your platelet count and things like that too. So I think it is important that your doctors work together also to come up with the best treatment option to treat your one autoimmune disease, but to make sure, you know, you might have positive benefits from this.
00:27:19
Speaker
Whereas if you tried something else, maybe you won't get the same outcome. Because I do believe that the medication I'm taking for my lupus has helped stabilize somewhat my platelet count, even though I'm not, you know, in the normal range or anything.
00:27:34
Speaker
at least it has stabilized. And I think a lot has to do with the medication for my lupus because it can be beneficial also for the ITP. That's a very good point. And I agree completely. And Beth, have you had that experience with your doctors sharing information?
00:27:51
Speaker
I think only occasionally or you know, when necessary. i did have a rheumatologist who recently retired who thought I should be on another drug that she thought could address both problems.
00:28:06
Speaker
And it sounded too strong to me and I wasn't really keen on it. And my hematologist wasn't so sure it would address both of them. So i ended up not doing it, but they did communicate at that point, but not usually.
00:28:24
Speaker
Okay. Yeah, I think it is really important that there's some communication. And I know nowadays they have portals that you can keep all your medical information in and that you can share with other doctors. And that might be something that we look forward to more so in the future so that you know that all the different aspects of your health are being looked at by different eyes and not just their specialty.
00:28:51
Speaker
The left hand needs to know what the right hand is doing, right? That's what they say. Anything you want to add to the conversation, Beth? Nothing I can think of. Well, again, i want to thank both of you because your time is valuable and sharing it like this is of value to our listening audience. And I really thank you both for participating. And I hope to see you at our next PDSA conference.
00:29:16
Speaker
So thank you. Thank you, Barbara. And I plan to be at the conference. So I'll see you there. I look forward to seeing both of you.
Active Participation in Treatment Decisions
00:29:25
Speaker
How do you live your life with a bleeding disorder like ITP? From working in the kitchen with knives, to navigating sharp corners in your house, going out to eat in a restaurant, traveling on a plane, attending a sporting event, even dancing at a wedding.
00:29:41
Speaker
ITP patient Barbara Pruitt shares her tips and tricks for moving through life with ITP for more than 60 years. Here's her lifestyle lesson for the day.
00:29:56
Speaker
If you are living in constant fear because you have ITP, I hope you listen to what Kathy and Beth both said. Both of them express the importance of knowing as much as you can about your disease.
00:30:15
Speaker
That is so true. If you're educated about ITP, You will better understand what is safe for you and what is unsafe.
00:30:26
Speaker
You need to understand your symptoms and at what point you need to contact your hematologist. If you understand and accept the limitations you have due to your ITP, you will feel more comfortable living your life, and that knowledge will alleviate your fears.
00:30:50
Speaker
So, what's my advice? Start learning. Go to the PDSA website and learn as much as you can about ITP.
00:31:02
Speaker
Talk to your doctor if you have questions. Why not join a support group, either in person or online? Connect with other ITP patients.
00:31:15
Speaker
And consider going to the PDSA conference. There's a world of information at it, and you will connect with so many other patients just like you.
00:31:28
Speaker
You know what they say. Knowledge is power. Well, that's it for today. hope you join me next time. And until then, wishing you lots of happy, healthy platelets.
00:31:44
Speaker
Thanks for listening to the PDSA podcast. Bruised but not broken. Living with ITP. made possible by our presenting sponsors, Amjet and Sanofi.
00:31:55
Speaker
Special thanks to Gus Majorga for composing our theme music.
00:32:01
Speaker
To see what's coming up, visit our website at pdsa.org and subscribe wherever you get your podcasts. Please share this podcast through social media with anyone who you think might benefit from the information and stories we share with the ITP and other platelet disorders community.
00:32:19
Speaker
As always, please speak with a healthcare professional before making any treatment decisions. But know that PDSA.org is a wealth of information and resources to help you navigate life with ITP and other platelet disorders.
00:32:36
Speaker
Remember, you are not alone.