Ep.8/ How Should People With Lupus Advocate For Themselves with Jenni Sorkin
How Should People With Lupus Advocate For Themselves with Jenni Sorkin
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Note: This transcription has been created with a help of an AI thus errors and mistranscriptions may be present.
[00:00:00] Jenni Sorkin: Hello, maternal Health 9 1 1. What's your emergency?
[00:00:08] Jenni Sorkin: 1, 2,
[00:00:09] Dr. Jill Baker: 3, 4.
[00:00:14] Dr. Jill Baker: Hi, I'm Dr. Jill Baker. I'm a wife, a mother, a community health scholar and executive director and a fertility coach. More than 12 years ago, I was on my own infertility journey. Since then, I've made it my personal mission to help anyone who is on their own journey. To become apparent as well as shed light on infertility and maternal health experiences of bipo women and couples.
[00:00:42] Dr. Jill Baker: Now let's begin this week's episode of Maternal Health 9 1 1.
[00:00:53] Dr. Jill Baker: Hello, maternal Health 9 1 1. Audience, this is your host, Dr. Jill Baker. I am very happy to be with you all today. It is May, it's the first week of May. And May is just such a great month for many reasons. One, it's tourist season. I'm a tourist. My birthday's coming up. My twins birthday is this month.
[00:01:17] Dr. Jill Baker: For those of us on the east coast, you feel Spring is coming, although you're still in spring, but it might be cold. But you get some hope. You get some hope. And I think for who I'm gonna talk with today and what we're gonna talk about today, hope, I think is a main theme o of this topic we're going to discuss today.
[00:01:37] Dr. Jill Baker: So I just found out. From this special guest that this month, that May is Lupus Awareness Month. And for those of you who you know, may not know, and I have to give you, numbers, as a public health doctor there are 1.5 million Americans and at least 5 million people worldwide who have a form of lupus.
[00:01:59] Dr. Jill Baker: Lupus also strikes mostly women of childbearing age. 90% of people living with lupus are women. And most people with Lu Lupus developed the disease between the ages of 15 and 44. Which is also for women, during their, reproductive years. So I just wanted to. Give you all that information.
[00:02:22] Dr. Jill Baker: Just so you know, if you didn't know these things. And so I have a very special friend today who's going to talk to us about lupus, her diagnosis and advocacy. Without further ado, I wanna officially welcome Ms. Jenny Sorkin to the show. She has been living with lupus since 2017.
[00:02:45] Dr. Jill Baker: She battles lupus mentally and physically every day. Jenny was born in Thomas River, New Jersey, and her home is in Los Angeles, California. She's been there for over 20 years. She holds a degree in audio, film, and video from the Art Institute of Fort Lauderdale. And she's worked in the entertainment industry for over 25 years.
[00:03:05] Dr. Jill Baker: She's been volunteering for the Lupus Foundation of America, Southern California region for over four years, and her volunteer work includes the Walk to end Lupus now, as well as facilitating a lupus support group. For two years. She has attended the Virtual Lupus Advocacy Summit in Washington DC in 2021 and 2022.
[00:03:29] Dr. Jill Baker: Connecting to the lupus community is dear to her heart. And Jenny is also proud to be an ambassador for the Lupus Foundation of America and continues her work by raising awareness and educating others about lupus. Without further ado Jenny, welcome to officially to my Maternal Health 9 1 1 Show.
[00:03:52] Dr. Jill Baker: And I'm thank you so
[00:03:53] Jenni Sorkin: much for having me. I'm so excited to be here. Thank you so much for having me and taking the time to do this. I appreciate We were
[00:04:00] Dr. Jill Baker: literally together this morning in a party. Yes, we were DJs, so Nice. Just so people know, we're not at a physical party. It is an online virtual party.
[00:04:13] Jenni Sorkin: Yes, it is. And it's a party.
[00:04:15] Dr. Jill Baker: And I think, so Jen, what are, we are like, what? I think we're together virtually at least three, three days a week, right? Maybe something Yes.
[00:04:24] Jenni Sorkin: At the most, yes, definitely. For sure.
[00:04:27] Dr. Jill Baker: Sure. And I'm mean such great people, such a great vibe. Everyone is just so much love, right?
[00:04:34] Dr. Jill Baker: And I was like, I, and then look, I, and I'm like, look who I end up meeting and how, and so Jenny and I met Anne and I said, you, I want you to talk about this talk, talk to the, my community, my audience about lupus. And she said, I will. And here you are. So I wanted to, the first thing I wanted to ask you is for people who may not know what Lu Lupus is, what, what is it, how would you explain it to somebody in very kind of simple terms?
[00:05:04] Jenni Sorkin: In simple terms. I would let people know that lupus is an autoimmune disease, which in an autoimmune disease, What happens is the body attacks healthy cells and tissue and with lupus, which we call systematic lupus, there's different types of lupus. It's in simple terms, an autoimmune disease that occurs when your body's immune system is attacking your own tissue, tissues and organs.
[00:05:31] Jenni Sorkin: This can be your kidneys, your skin, your bones, your brain. So that is in short what lupus is, a chronic autoimmune disease.
[00:05:43] Dr. Jill Baker: Thank you for sharing that. And how does lupus stand out from other similar diseases?
[00:05:50] Jenni Sorkin: Lupus stands out more in the way of that. It's so different for every single person.
[00:05:58] Jenni Sorkin: So you could have one person that will have some symptoms and going through some things health wise and other people who don't have it as chronic, but it's still considered a chronic illness. Ok. So that's one of the things that does stand out.
[00:06:13] Dr. Jill Baker: That makes a lot, that makes a lot of sense.
[00:06:15] Dr. Jill Baker: What are some of the symptoms of lupus? What should people maybe be aw aware of?
[00:06:23] Jenni Sorkin: First, everyone should just be aware of their body in general as we know and their health. And I would recommend that being aware of fatigue and not Mixing it up with burnout as we get. I can only speak from my own experience.
[00:06:44] Jenni Sorkin: My symptoms were joint pain, fatigue. Not being able to sleep properly, not being able to exercise, not being able to do the work hours that were given to me. Brain fog where you'll forget certain things at certain times because you're in a lot of pain. So it's a lot of chronic pain for us.
[00:07:05] Jenni Sorkin: But mostly it, for me it was skin and joint pain. And I had a lot of kidney issues. I had a lot of renal, a renal, a lot of kidney issue issues and renal issues. And then later on in my diagnosis it started to attack my essential nervous system.
[00:07:23] Dr. Jill Baker: And so when were, can you walk us through when did you get diagnosed?
[00:07:30] Dr. Jill Baker: But maybe what. I guess what was presenting that you maybe got to the point of, maybe something's wrong or something, feels off and I need to find out, you know what this is?
[00:07:46] Jenni Sorkin: Absolutely. Yeah. I first noticed it when I was working I was working as a post producer in the entertainment industry, and as in the entertainment industry we work very long hours, crazy hours.
[00:08:00] Jenni Sorkin: Yes. And I was mistaking, like I had said earlier, I was mistaking that I was feeling burnt out. But I was really very fatigued and it's very high Stress. Stress is definitely a trigger for lupus as well. Yes. So I was working 16, 18 hour days, sometimes spending nights on couches, and just not.
[00:08:23] Jenni Sorkin: Getting the proper rest. And I thought, oh, I'm just burned out. Nothing's wrong with me. And I thought it got progressively worse. So I went to my general practitioner. My general practitioner said, tell me some more of your symptoms. Like my body's hurting, I'm getting these rashes. When I'm going to the bathroom, I'm seeing blood.
[00:08:43] Jenni Sorkin: Like I was, those were some of the things that I was going through right in the beginning. Okay. And he's I'm gonna send you to a rheumatologist. I went to one rheumatologist that rheumatologist did not work out for me. I went to a second rheumatologist. Yes. That rheumatologist did not work out for me.
[00:09:02] Jenni Sorkin: And then I went to a third rheumatologist. And he's one of the best in the country. Yeah. And I was, I'm just put it all down and said I need to know what's going on. We need to make, we need to figure out a treatment because this is what's happening. I'm continuously getting infections.
[00:09:19] Jenni Sorkin: I'm always tired. I'm getting these rashes. I don't know what's going on. And we did our, we did, I did my labs and he said, you have lupus. And I was like, what? Like I already knew what lupus was. Cause I had worked with a girlfriend who had lupus, but hers was completely different than mine. Ok. So I was a little bit aware of it.
[00:09:43] Jenni Sorkin: Yes. Yeah. But when I heard it I was like, wow. What did that kind
[00:09:48] Dr. Jill Baker: like, feel like in, in your body? Like when you've heard
[00:09:52] Jenni Sorkin: that? I was shocked. Yeah. But I was also relieved at the same time just to get a real diagnosis. Cause
[00:10:01] Dr. Jill Baker: that whole doing all the running around, doing all the tests and stuff like that.
[00:10:06] Dr. Jill Baker: Yeah. Yes. I don't think I don't think, I don't think I shared with you that a few, about 10 years ago or eight years, or maybe eight years ago or so, I went through the same thing and I had, chronic fatigue, brain fog, all the things that you're saying. And the doctors just really couldn't figure out what was wrong with me for two years.
[00:10:27] Dr. Jill Baker: Two, yeah, two years. And Nick, I did get tested for lupus. But I didn't have that. But no, when I would tell people, I have brain fog and, people would say, oh, you're just tired. And I'm like, no, it's not. Yeah, it's not the same. Or you have chronic fatigue. And then people would say, oh, you're really tired.
[00:10:44] Dr. Jill Baker: And it's no, there's a difference between chronic fatigue and being tired. But it's really hard to explain to people the difference. And that was just so frustrating.
[00:10:57] Jenni Sorkin: Yes. I explain it to people that it feels like you have the flu all the time.
[00:11:04] Dr. Jill Baker: That's a good, okay. See, and people can understand that, stand that, yeah.
[00:11:08] Dr. Jill Baker: Yeah. Correct. Yeah. Yeah. Correct. So then when you, okay, so then you find out you, you have lupus and then who was the next person that you told.
[00:11:20] Jenni Sorkin: After that I wind up getting through my rheumatologist. We started a chemotherapy. Okay. It, my levels were so high that, and it wasn't at the time, it wasn't in infusion or going in to get, it was pill, it was in pill form.
[00:11:37] Jenni Sorkin: And we tried that for a while, but things got worse. So then I had to start seeing urologists because my renal system was being attacked and I was in the hospital seven months out of the year in 2021. Seven months of my life was pretty much taken away from me, just from infection and kidney function.
[00:12:00] Jenni Sorkin: Not working properly and not being well, and my renal system not being being well. So I was going through having a lot of UTIs and those types of issues and infections. So we took me off the, that chemo and then we started a, my rheumatologist and my urologist spoke with each other and decided that maybe I should try.
[00:12:28] Jenni Sorkin: A different type of chemo and then also a different type of infusion, which I'm still doing till this day, which has been very helpful. Oh, okay. So we started going through that because we had found out that not only was it attacking my kidneys, it was attacking my essential nervous system as well.
[00:12:49] Jenni Sorkin: And that's where the brain fog and the right. And some of the back pain and things were happening. So I have a whole team of doctors. I have a rheumatologist, I have a dermatologist, I have an endocrinol. All the is,
[00:13:04] Dr. Jill Baker: yeah, that's what I say. All the ist.
[00:13:07] Jenni Sorkin: I have them all. But my two main ones are my neurologist, rheumatologist, and my urologist.
[00:13:14] Jenni Sorkin: Those are my three main. Doctors that I see on the regular as far as getting labs done and those kinds of things. So when that happened I still continued to do the treatments and we still weren't at a good place in, I was diagnosed in 2017. So from until. Last year, 2022 is when we really started to start to see some improvements in some areas.
[00:13:49] Jenni Sorkin: Ok. Which was great. That's amazing. Yes, it is. I was able to get off of chemo just a month ago. Oh, congrat, congratulations. Thank you. Yes. The first time I'm publicly talking about it. I, and you're talking
[00:14:05] Dr. Jill Baker: about it with me. I'm
[00:14:07] Jenni Sorkin: yeah I thank you. And it's been going really well cause my lupus numbers have starting to go down a little bit and my, my like rheumatoid arthritis numbers are starting to go down a little bit as well. So that's been helpful. And now, I started when on my journey I was taking 28 pills a day.
[00:14:30] Dr. Jill Baker: Oh my
[00:14:30] Jenni Sorkin: goodness. And getting chemo. And it was absolutely terrible. Yeah. 28 pills. Yeah. And now, you have to do the work. This comes into advocacy. You have to do the work, and you have to pay attention. You have to educate yourself, and as you're educating yourself, you're educating others and you're learning from others on how to really, work through the system.
[00:14:53] Jenni Sorkin: As far as. Getting the right treatment, getting the right doctor team, those types of things. And I feel like I'm a walking testimony as far as when you're putting the work in and you're really paying attention to your body and your mind and your soul, that you know you can get better, you can get lupus doesn't go away.
[00:15:13] Jenni Sorkin: Lupus doesn't have me, but. I have it, but it doesn't go away. There's no cure for it, but you can place, I know, and, but you can get to a place where you can manage it and still live a very happy and healthy life. And that's the transition that I'm in currently.
[00:15:36] Dr. Jill Baker: And that's where the hope part comes in.
[00:15:38] Jenni Sorkin: Absolutely. Yeah. Yeah, absolutely.
[00:15:43] Dr. Jill Baker: So you talked about advocacy and I'm glad that you brought that up cuz I definitely wanted us to talk about that. Because I talked about advocacy a lot on, on this show especially, regarding just advocating for your yourself in the healthcare system, especially.
[00:16:03] Dr. Jill Baker: For women that are, pregnant, trying to get pregnant, trying to survive their pregnancy, come home alive, women of, color and their families and the disparities. But I, think and feel that advocacy, for yourself that can be applied to your life and your, your entire life course.
[00:16:23] Dr. Jill Baker: And so I just, in your experience and with other people that, you've been helping who've also been, diagnosed with lupus, what is some advice that you give to people who are, newly diagnosed with
[00:16:39] Jenni Sorkin: Lupus? What I tell them is to number one, Jump into the community, jump into the lupus community like I did.
[00:16:51] Jenni Sorkin: The first thing I did was go to the lupus foundation of america.org and I just started educating myself. And then through that I learned how to ed learned how to educate myself and advocate for myself. Education first. You gotta help yourself first before you can help others.
[00:17:12] Jenni Sorkin: So educate. I love that. Educating myself first. Not only that, but really accountability for what's going on in your life too. At the same time. Yeah. Yes. And then you can really roll yourself into the community and being part of a community. No matter what it might be, if you're having infertility issues, if you are, going through cancer or me like with lupus. If anything, try to be part of some kinda community that's gonna be a support system, because I can tell you and be con be completely transparent about this, your family and friends. Are not always going to be the ones that are going be the best people to support you. They don't understand what you're going through, so then that you, once you've education friends and educate them, so understand you.
[00:18:17] Dr. Jill Baker: And then that also gives your family and friends some, some grace if you look at it like that. Like they're not always gonna be the ones to be able to understand or relate to. Absolutely. My experience. Absolutely. Yeah. Yeah. So how has this with your, your husband, I know you're ma, you're married and your family Yeah.
[00:18:39] Dr. Jill Baker: How has this, cha, changed your relationships, with your husband, with your friends, your family? Yeah. How what has that been like?
[00:18:49] Jenni Sorkin: It's been.
[00:18:53] Jenni Sorkin: Very challenging. It's a it's very challenging. Marriage in itself is already challenging. And then you have to throw in a chronic illness. And now you have your partner who has
[00:19:05] Jenni Sorkin: your caretaker. In a way, right? Yes. And then we have to change plans, going back to what you advocate as far as in infertility, in working with a lot of people in that realm. We had to make a decision, are we going to have children? Are we not going to have children?
[00:19:24] Jenni Sorkin: I was having a lot of issues in that area as well. And we explored some things but we had decided with, at my age when I was diagnosed, I was 41. And then with the medications that I was taking, that, that wasn't going to be an option for us. And I'm just blessed that I have a stepson, but that changed the whole.
[00:19:50] Jenni Sorkin: Kind of story of our life in that moment. You're hoping that you can build your family, but unfortunately we just couldn't do this. And there is also a thing called neonatal lupus. It's called nl. And I wanted to bring this up in your podcast today because I really, thought that it would be interesting for.
[00:20:13] Jenni Sorkin: Women out there who, there's many women who have lupus, who have had successful and safe pregnancies. And what happens though in neonatal lupus sometimes, I don't know the exact numbers, is that autoimmune disease, the autoimmune antibodies get transferred through the fetus into.
[00:20:40] Jenni Sorkin: Your child, into the fetus and into your, so it can be passed down. Oh, okay. Wow. So it can become progressive. So that was we looked at everything, and how our future might look. We just sat down together. My husband and I are more, we're a team, we're a partnership.
[00:20:59] Jenni Sorkin: We, we just sat down together and said, look. I've been helping him raise his kids since he was three. I'm blessed to have him.
[00:21:09] Jenni Sorkin: Just having children wasn't gonna be an option for us. Yes. Age was against me. Okay. Yeah, it was age and also I had to, I al, and I'll be transparent about this as well, is I had to have a hysterectomy. Because it was, it wound up attacking my uterus, my fallopian tubes. I started getting more cysts.
[00:21:37] Jenni Sorkin: I had a endometriosis, which is inside the uterus, not outside. So it's the, yeah. So I had to have that done during all of this time while I was going through all of my lupus stuff as well. Yeah it wasn't in the cards, but like I say, I always feel very blessed that, I have my stepson and yeah.
[00:22:00] Jenni Sorkin: So
[00:22:00] Dr. Jill Baker: How old were you when this, when that when you got that pro, that procedure done, how old were you at that time?
[00:22:06] Jenni Sorkin: It was 20, I was 41. Okay. Yeah, 41. 41. And I can tell you that we had tried before in our, cause I've been with him for 20 years. We had tried early, me and my husband
[00:22:22] Dr. Jill Baker: too. Look, see we have something else in common.
[00:22:27] Jenni Sorkin: 20 years is a long time. Woo. 20
[00:22:30] Dr. Jill Baker: more. We'll get there. I'm gonna send you your award in the mail. Okay? Okay.
[00:22:34] Jenni Sorkin: I'll send you the ward too. And, we had tried and I just, it kept on rejecting and rejecting and that is, that's also was probably a sign of my body telling me something else is going on.
[00:22:49] Jenni Sorkin: At the time did I know it was lupus? Absolutely not. But something was going on. It's not like we didn't try, but
[00:22:56] Dr. Jill Baker: So how did, so your husband was how did he feel about it? Once you all got to the police where you were like, okay, this is, having a biological child was just not, it was sad.
[00:23:09] Dr. Jill Baker: Yeah. Yeah. That's
[00:23:10] Jenni Sorkin: loss. Yeah, it was sad. I personally don't know many women who wouldn't wanna bear a child, and wouldn't wanna, Do that. Yeah, I it was sad. And we had to go through a grieving process, right? Yes. Angry and we're inter depressed, and then we accepted it.
[00:23:27] Jenni Sorkin: Then we were bargaining again and going, oh, should we do, maybe we should try IVF again. Maybe we should do the, like we were, and it, we, Ben Lupus hit and we're like, okay, you know what? This is. Let's stick with this. We need to focus on my health and get me through what I need to get through.
[00:23:47] Jenni Sorkin: And sometimes this, the times and the stars don't align. And for us, I think that like everything, every couple is different. It just maybe just was not in the cards for us, but we tried to give it, we did try to give it a try, but yeah.
[00:24:04] Dr. Jill Baker: Yeah. Your husband sounds amazing and he sounds, he's amazing.
[00:24:09] Dr. Jill Baker: Like he's very supportive. And
[00:24:14] Jenni Sorkin: now he has been my caretaker for seven years. He's, wow. He does a lot. He does a lot for me. He does a lot for me. He's a very, he's, and I've had to educate him. So that is something that, I recommend if you have a partner. It's different from opposed to when if you're dating, you're younger and you have lupus than when you already have a partner, right?
[00:24:35] Jenni Sorkin: And you have, you're building a family. That's why I say it's always different for so many different people, right? But for us, we were both like, you know what? Let's just hit the ground running. Let's keep, let's just stay. Let's just stay educated. Let's stay in this community. He just continued to, be my advocate too.
[00:24:53] Jenni Sorkin: And he, he's learned if I have to go to er, he speaks for me. He's just boom. He knows everything about lupus. I love that. He's my partner, he comes in and helps me and that that's the best thing ever. And he will say, Tell me if you need something.
[00:25:08] Jenni Sorkin: Cuz I, I was stubborn at first. I was like, no, I can do this. I can get up, I can, I can do the things. I can do the hard things, and I was all about that. But that's not really the way to look at it. You have to really ask people and be comfortable and asking people for help, when you need it because it will save you in the long run, the end of the day.
[00:25:29] Dr. Jill Baker: I love that. I love that. And I think when we talked, you shared with me that you have a friend who has lupus and who was able to have a baby, right? Yes.
[00:25:40] Jenni Sorkin: Talked about that, right? Yeah. Yes. I do have a friend and she's having her second child. Oh. So I, I know a ton of success stories with women who have had.
[00:25:56] Jenni Sorkin: Had children with lupus. It's just a matter of making sure you're with the right doctors and that you are eating well. Getting rest, all the things that, that you would normally do while you are pregnant. And low stress. I know she does like baby yoga. Like she has all kinds just to keep it, really very calm and a good experience for her.
[00:26:27] Jenni Sorkin: And this will be her second time around. So she's, oh goodness. Yeah I'm super excited for her and her first child that she had was very healthy. And and she came out healthy too. It's definitely a great success story for sure.
[00:26:42] Dr. Jill Baker: I love it. I love it. So shout out to your friend like that.
[00:26:47] Dr. Jill Baker: That's so amazing. That is like the best. And to your husband too, because Oh, thank you. He obviously loves you and so supportive of you. So the other thing we wanna en thank you, for sharing that, I know this is very personal but I just think you know your story. I just think this will be so helpful for people and really raising awareness as much as possible.
[00:27:18] Dr. Jill Baker: So Jenny, can you talk to us a little bit about national Lupus Awareness Month which is in May and now it's early in May. So if they're people who wanna get, in, in involved, I I would love for the audience to know how they can get involved in any of the events that are going on.
[00:27:38] Jenni Sorkin: Yes, absolutely. Okay. So the month of May is like Christmas for lupus. It's just it's just there's a ton of educational events. We have an advocating, advocating committee that gets together and each person will set a table up at a farmer's market. We try to light up a building purple because purple's our signature
[00:28:04] Dr. Jill Baker: color.
[00:28:05] Dr. Jill Baker: Oh, okay. Purple is the color. Okay. Purple is the color. Yes. Everybody. You heard that purple's the color.
[00:28:11] Jenni Sorkin: Yes. And we also will have events online. We'll have events educational events. We just recently had a group of people go to the hill in person this year. I've only done it twice.
[00:28:27] Jenni Sorkin: Oh, that's amazing. Virtually, but they went in person this year. Yeah. Which was amazing. Fundraising also is a big one because you can fundraise and advocate and make people aware of lupus at the same time. So you're doing it all together. I myself one of my biggest days in May is Lupus Awareness Month in, in Lupus Awareness Month is May 10th, which is World Lupus Day.
[00:28:53] Jenni Sorkin: Okay. And it's also put on Purple Day where everyone puts on purple and we celebrate the world as far as people around the world who are having who have this disease or who are survivors of this disease. So May 10th is a big day for me. I really like to bring out faces that we don't normally see o on our socials or maybe not getting reached out to as much.
[00:29:19] Jenni Sorkin: And I like to hear their, I like to hear their stories. And so I'll be doing that. This will be my second year doing that. I'll be doing live on Instagram for that. Those are just some of the things, but it's, or it could be really simple if you're like newly diagnosed, it can just be telling your story.
[00:29:39] Jenni Sorkin: Go online. Record something or go live if you're comfortable enough. Or you can even journal something and then share it on a blog. You don't have to blog and show everything. If you're not comfortable with that, you can. Start a blog and share your blog with someone so they can maybe follow your journey and understand lupus more.
[00:30:02] Jenni Sorkin: Just raising awareness and being powerful about it is what you know brings, you know the mission, you know the mission. Hope you know that, we're trying to just basically be powerful to help improve the quality for programs and researches and for research, education, supporting others.
[00:30:24] Jenni Sorkin: All those things are so important. So that's what we do in this month and it's pretty exciting. It's a lot and it's a lot of fun too.
[00:30:32] Dr. Jill Baker: It sounds like it's fun, and I love that there, there's a built in community because sometimes, with health issues it can be har, it can be hard to find or find a community, and you really need that social support and people who understand.
[00:30:54] Dr. Jill Baker: Absolutely. Yeah. So I absolutely, I love hearing that. Is there anything that you are hopeful about just regarding, lupus and, maybe where the f the future holds that may help some people who just also got newly diagnosed?
[00:31:14] Jenni Sorkin: Definitely I can say that there are a lot of new medications that.
[00:31:22] Jenni Sorkin: And treatments that are available now that there were 10 years ago and even five years ago. So that gives the community hope. Yeah. If that's the direction they wanna go into. And there's holistic ways as well. So it's how you choose it. But I can tell you that there are so many more. Outlets to dive into if you are newly diagnosed.
[00:31:52] Jenni Sorkin: And don't lose hope for that because the community is wonderful and it's just really, like I said in the beginning, educating yourself and diving yourself into the Lupus community wherever you may be. And my dms are always open on Instagram, so I love that. I, if you, I don't if you live, in Nigeria I can help you.
[00:32:16] Jenni Sorkin: There's a group there. There's, there, there's so much hope for just, so many people who. Have just been diagnosed or have been diagnosed for a long time and are, maybe came outta remission. And they're flaring again. Something's going on. There's Yes. Yeah, there's hope.
[00:32:34] Jenni Sorkin: There is hope there because there's so much, the technology is changed, medicine has changed, doctors are changing. I think. Something that the pandemic had brought to all of us is that we now know how to really access resources better. Yeah. I'm hoping that people have followed that assignment, right?
[00:32:55] Dr. Jill Baker: Yes. I hope so too. But that's, yeah. Part of why I have the
[00:32:59] Jenni Sorkin: show too, right? Yeah. There you go. And and in shows like this, and just really for me, The hope that we can continue having programs to continue research, to continue educating, continue to support each other, and just stay in that loop doesn't have to be your whole entire life.
[00:33:26] Jenni Sorkin: We have a saying in our community, it's I may have lupus, but lupus doesn't have me. Ooh. I love that and I love that. It's a really powerful statement. Cause it's true, you, it's really easy for any disease or any kind of health disparities to get
[00:33:43] Dr. Jill Baker: caught chronic disease.
[00:33:45] Jenni Sorkin: Yes, absolutely. Yes.
[00:33:47] Jenni Sorkin: To get caught up in and to get caught up in it and it make it your identity. Your
[00:33:52] Dr. Jill Baker: identity.
[00:33:52] Jenni Sorkin: Yes. Yes. And right. Do you, What I like to do is mentor people and how you can make it, it is part of your life, but it's not all of you. And I love that. So I think that there's a lot of hope in just saying that in itself, I love that.
[00:34:11] Dr. Jill Baker: I love that. And I think this is a great place to leave. This show for today, and I see this as. One of our first many conversations on the show. So just two, quick things for people to know. So May 10th right. Is National Lupus Awareness Day.
[00:34:30] Jenni Sorkin: It's World Lupus Day.
[00:34:32] Jenni Sorkin: World
[00:34:32] Dr. Jill Baker: Lupus Day. I'm gonna get that right and then I'll make That's okay. Sure. In the The description for the show that's in there correctly and that this month, the month of May is lupus awareness month, right? Is that correct? I got that, yes. Yep. Okay. Alright everybody and you have many times to wear purple, which is one of my favorite colors.
[00:34:53] Dr. Jill Baker: How can you not like purple? I know it's beautiful. It's a happy color, beautiful, happy color, right? And so I think that's the right color for this yeah, for this disease. So Sister, thank you so much. I mean You're
[00:35:08] Jenni Sorkin: welcome. Thanks for having me. This is,
[00:35:10] Dr. Jill Baker: I'm, I've been so excited for weeks about it.
[00:35:15] Jenni Sorkin: I know. And I so appreciate. I'm pre I appreciate your time cause I know you're a busy lady, so
[00:35:22] Dr. Jill Baker: We both, but we are like, okay, we gotta make this happen. This is, this is, these are the things that are important. And like you said social, social media, it has its challenges.
[00:35:35] Dr. Jill Baker: But it does, the beauty of being in these, virtual, like you said, this is, our Twitch being our, it's a virtual community and really being what, some like-minded. Souls and absolutely who are out, doing real things, trying to make real change. So thank you so much, my sister.
[00:35:57] Dr. Jill Baker: Thank you. You're welcome. Jenny Sorkin for joining me today and sharing your whole journey and your diagnosis of lupus and where you are today. And I think. We left some amazing guidance for people. Can you let the listeners, know how they can find you or connect with you on social media?
[00:36:19] Jenni Sorkin: Absolutely. I am most active on Instagram and I am at gen b j e n b e seven b6. And please feel free to pop in my DM if you have any questions or need resources. I am I'm here for anyone who, even if you think you might have lupus, just pop
[00:36:43] Dr. Jill Baker: in. Thank you so much for sharing that and everyone else you can follow maternal health 9 1 1 on Instagram, Facebook, and Twitter.
[00:36:54] Dr. Jill Baker: You can DM me on at Dr. Jill Baker on ID and Twitter with your questions, thoughts, or to share your story. I would love to hear from more of you and have some of you on the show to highlight your experiences and anything you wanna share. Any more information you wanna know about your host, please visit ww dot dr joe baker.com.
[00:37:19] Dr. Jill Baker: If you're listening on Apple Podcast, please rate and review the show. It really helps the show and I welcome the feedback. So peace everyone. Until next time.
[00:37:34] Jenni Sorkin: 3, 2, 1.
[00:37:36] Dr. Jill Baker: Yeah. Thank you for listening to this episode of Maternal Health 9 1 1. Please follow the show on Instagram, Facebook, and Twitter. Feel free to DM me with your questions and thoughts or to share your infertility, fertility, and maternal health story. For more information on this podcast and your host, Visit ww dot dr joe baker.com listening to the show on Apple Podcast.
[00:38:01] Dr. Jill Baker: Please rate and review it. It really helps the show and the feedback is welcome.
[00:38:17] Jenni Sorkin: You go.
As of the time of this recording, 1.5 million Americans, and at least five million people worldwide, have a form of lupus. Lupus strikes mostly women of childbearing age. Ninety percent (90%) of people living with lupus are women. Most people with lupus develop the disease between the ages of 15-44. In today's episode, Dr. Jill and her friend whom she met on a online community platform is talking about lupus diagnosis and management as Jenni generously shared her story and journey.
Some details to note from this episode:
1.5 million Americans, and at least five million people worldwide, have a form of lupus.
Lupus strikes mostly women of childbearing age.
Ninety percent (90%) of people living with lupus are women. Most people with lupus develop the disease between the ages of 15-44.
About Our Guest:
Jenni Sorokin has been living with Lupus since 2017. She battles Lupus mentally and physically everyday.
She was Born in Toms River, New Jersey. Her home has been Los Angles, Califorina for over 20 years. She holds a degree in Audio, Film and Video from The Art Institude of Ft. Lauderdale and has worked in the entertainment industry for over 25 years.
“Lupus stripped me away from a career I truly loved. It’s taken away everyday activities I use to be able to do and enjoy.”
“My work now is to focus on my health and help others do the same”
She has been volunteering for The Lupus Foundation of American, Southern Califorina Region for over four years. Her volunteer work includes, The Walk to End Lupus Now, as well as facilitating a Lupus support group for two years. She has attended The Virtual Lupus Advocacy Summit in Washington, DC in 2021 and 2022.
Connecting to the Lupus community is dear to Jenni’s heart. she is proud to be an ambassador for The Lupus Foundation of American and continues her work by raising awareness and educating others about Lupus.
Learn more about Dr. Jill here.
Have a story to share? Send us an email at maternalheatlth911@gmail.com
Follow Dr. Jill:
LinkedIn:
https://www.linkedin.com/in/dr-jillian-baker-61543222/
Instragram: https://www.instagram.com/explore/tags/maternalhealth911/
and
https://www.instagram.com/drjillbaker/
