Jenny Prince | TalkBack
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00:00Jenny Prince, who in North Carolina heads up the awareness week for the autoimmune disease known as lupus, but it really encompasses, you know, a whole range of 80 different diseases and people who have these, I've got a sister with what's called Sjogren's disease or Sjogren's syndrome.
00:22And I've got another friend who suffers from an autoimmune disease. We'll never know how debilitating these things can be, but you've got some help on the way.
00:34And let's talk about some of the things that you're going to be doing during this Lupus Awareness Month.
00:42Right. Thank you so much for having me. Yes. May is Lupus Awareness Month.
00:46We are celebrating it across the country and we use this month just exactly like you said, to bring away the disease itself, as well as celebrate our thrivers.
00:58That's what we call our constituents throughout the state living with Lupus, as well as to a response to treat the disease and educate those living with us.
01:07For those of you that don't know, lupus is an autoimmune disease, like you said, but in this case, it's when your body in its simplest form thinks healthy tissue and organs are unhealthy and it starts attacking your, your body.
01:22It takes place internally. So it is a disease that to your point, it doesn't look like you're sick, which is probably one of the biggest frustrations for people living with lupus, but it does make you miserable, just like you said.
01:37And it's a horrible disease with no known cure.
01:40Well, and so people need to be under constant treatment.
01:45My friend in Georgia who has an autoimmune disease, he gets infusions and they've made great strides.
01:54And my sister's doing better with control of her disease.
01:58And again, if there is no cure, you've just got to stay under doctor's care and supervision all the way through.
02:06But I appreciate the fact that more of these things are being taken care of.
02:13You know, one of the things I found that was just kind of interesting, because anybody who watches television these days, you can't get away from Ted, the thyroid eye disease.
02:28But that's one, one of the 80 diseases, right?
02:33I believe so. Yes.
02:34I'm not super familiar with that disease, but I think you're correct.
02:37Well, I mean, you know, it's, it's the drug companies put these ads on it.
02:41It brings us a little bit of awareness throughout the fact that we just see a lot of it.
02:47But the, the way that treatments are being developed, is that an encouraging sign?
02:54I think it's absolutely, I think it brings a lot of hope.
02:59So for instance, last year alone, in 2021, two new drugs were approved by the FDA by two different companies that treat lupus specifically.
03:11So the fact that we're seeing lots of research and approval of drugs by the FDA to treat lupus is really extraordinary because it's been since the 80s, since a drug was approved for lupus specifically.
03:25That paired with the research that's done and the clinical trials that take place are a huge factor in continuing through the treatment of the disease, as well as the awareness that we try to provide.
03:38Because since lupus can take anywhere from five to seven years to diagnose, the quicker it can be diagnosed, the quicker we can get a handle on it and do exactly what you said.
03:47Learn to live with the disease so that you can have as fulfilling life as possible.
03:51Well, you called them thrivers and I really appreciate the positive part of this thing because it can be, you know, tough to diagnose in some cases and you're feeling bad and you don't know why.
04:08And then, you know, finding the right treatment for you can be an adventure in itself.
04:13So talk about, I want to ask a lead-in question through the Lupus Awareness Month.
04:22You've got about four different stages you're trying to accomplish.
04:25Can you outline those for us?
04:27Yes, that's correct.
04:28Each week we're taking a specific focus.
04:31So for the first week, it's symptoms and diagnosis.
04:33And on our landing page, through our social media, website, et cetera, and through some of our webinars, week one, we're going to focus on what are the symptoms of lupus and how is it diagnosed.
04:46Week two will be the impact on the body.
04:49And that's everything from what does it do to, if you think about lupus attacking healthy organs, our whole bodies are made up of organs, including our skin and our heart and our kidneys, that type thing.
05:00So what is the impact on the body, depending on where lupus is affecting you?
05:05And then week three, which they're all important weeks.
05:11So week three is lupus and quality of life.
05:13So like you mentioned, your sister and your friend, you can still have quality of life, but it's understanding how to live with the disease and treat it.
05:23Having a good team, like you said, of physicians and care, that type thing.
05:26And then last, the last week will be research and treatments.
05:30Research is so important to further the science and understanding of the disease, as well as the treatment options.
05:36You mentioned infusions.
05:38We have many, many lupus thrivers that get infusions on a regular basis, as well as what are the medications and other preventative things that can be done, like nutrition, exercise, all of those different things.
05:50So it's definitely going to be a full month of information that we're providing for people that can really, I think, help improve their quality of life.
05:59Well, let's talk about diagnosis, how you go about trying to find out what's wrong with you.
06:08Maybe you don't feel just up to par or you've got this syndrome that you've talked about where you don't look sick, but boy, you feel like a mess.
06:18Right. Exactly. So the average time for diagnosis for lupus is anywhere from five to seven years, which is a very long time to feel bad and not know what's going on with your body, as well as a long time to live with something happening to your body.
06:35When, if you did treatment immediately, it can make a big difference in, um, organ, your organ.
06:41So, you know, of course, if you are feeling any symptoms of, um, lupus, it can be hair loss.
06:47It can be skin rashes. It can be body aches and pains. It can be chronic fatigue.
06:51Um, there's just a variety of, um, symptoms that are important to talk about.
06:59And, you know, I think sometimes we hear our lupus thrivers say, well, I'm just used to not feeling good.
07:04So I just get on up and plow through my day, but really paying attention to your body feeling differently than you're used to is vitally important.
07:12And also being your own advocate with your physician and your healthcare team of, um, you know, my joints really hurt.
07:20Well, you know, maybe somebody might think, well, I'm supposed to hurt the older I get.
07:24Well, no, you're not supposed to hurt. And describing that pain, we encourage people to journal and really keep track of things that they see, um, or, or feel inflammation can be, um, a big sign as well to pay attention to and your joint pain.
07:39So really being your own advocate, because since lupus isn't other than the rashes, the visible disease, you really have to be able to articulate how you feel and be an advocate for yourself with your physician team.
07:53I like that advice. And I, uh, especially like the journaling part of it because sometimes in finding causes and effects, you need to have the fact that, you know, I got a rash here or, or, you know, I felt like, uh,
08:09this year, but it went away. But if you had an aching joint that would come and go, you know, writing that stuff down, kind of keeping track of, you know, the kind of things you're eating and all that stuff, all of that can be very, very helpful.
08:28Because in the diagnosis, you said, it can take a while. Now, once you are diagnosed, what are the steps after that?
08:38Well, once you are, you want to make sure that you have a phenomenal relationship with your physician.
08:45Um, rheumatologists are usually the doctors that are, um, that are, um, that treat lupus primarily.
08:51So you want to make sure that you have, um, a rheumatologist helping you treat the disease on a regular basis.
08:58We at the Lupus Foundation have a list of physicians throughout the state that we can recommend for you if you're looking for a physician.
09:04Um, and you want to make sure you're on top of it and following their advice, as well as seeking as much information that you can to learn to live with it.
09:15Um, it is going to be critical to, um, learn some of the steps. So for instance, many, um, folks that, um, are diagnosed with lupus have sun sensitivity.
09:24Um, you know, it's May, we're hitting the summer months in North Carolina. Um, what are the best suns to use?
09:31What are the best skin products that are for sensitive skin? What are some clothing that have certain SPF?
09:36Those type things are tools that we can help you learn just to manage the disease on a daily basis.
09:41Um, rest is critical, um, to make sure that you're resting as well and giving your body a break.
09:47So there's so much that you can do to, again, help improve your quality of life, but staying on top of it.
09:55Um, we joking, it's not a joke, but kind of one of our sayings is, um, lupus doesn't take a day off.
10:00Um, so we can't, and, um, you don't get to, um, just like your job.
10:05If you leave at five o'clock on a Friday afternoon, um, lupus is still there and present.
10:09So it's having to be on top of it, um, nonstop.
10:12Well, my sister in particular has learned when she's under duress, cancel things, take it easier.
10:22Just do things that make her feel a little bit calmer so she can enjoy life.
10:29And I think to your sister's point, it's important to give yourself grace with that as well.
10:34To say, you know, it's okay that I'm not going to this event, or it's okay that I'm going to bed early tonight, whatever that may be that helps your, um, or, um, you know, we also, um, have given the advice that because our three lupus thrivers have told us if you have, say you have a big event coming up for the weekend.
10:54Um, you know, um, you know, a friend's wedding, so to speak, that you really want to make sure you're part of it is as you're leading up to that week, really keeping it kind of low key, um, so that you can save your energy, if you will, to be able to take part in something important like that.
11:09Well, that's excellent advice. Now you've got a wonderful website that will direct people to all kinds of other resources. Let's spend some time talking about that website.
11:22That's correct. Our website is lupusnc, like North Carolina, l-u-p-u-s-n-c.org. And you can find a plethora of information, everything from, could I have lupus? What are some symptoms, um, some, um, factors that could indicate that I have lupus? Um, what are some educational activities that are taking place that I can sign up for? Webinars, that type thing. Um, we have a walk every year. This year it's
11:50box chamber in person, which we're excited to be back in person. You can sign up for a walk. Um, you can connect with a support group. Um, there is an active one in Cumberland County that does great work that you can connect with. Um, you can sign up for, um, a new, uh, quarterly newsletter that tells you things that are going on throughout the, um, the world, everything from research and education to activities and ways to get involved as a volunteer.
12:16One of the, uh, outstanding lupus, uh, ambassadors in our area actually began playing college basketball at Fayetteville State. And then she discovered she had lupus and it was just a, a turnaround in her health fortunes. But because she had this champion mentality, she went up and above board in trying to say, Hey, this can happen.
12:43If it can happen to me, if it can happen to me, it can happen to anybody.
12:48Absolutely. And we are fortunate to have wonderful volunteers and the, um, Cumberland County Fayetteville area that have been longstanding volunteers for us.
12:58Everything from leading support groups to leading our annual walk to representing, um, on the chapter's behalf. Um, we, um, different events and activities. I know, um, we've had, um, them at the Dogwood Festival. That's a big part of Cumberland County.
13:15And, um, um, representing us at all different, um, uh, opportunities and, um, events. So we are very grateful for those that take this disease by the horns, if you will, um, have that champion mentality. I know exactly what you're talking about and how they can turn where a disease that can make you feel defeated.
13:34And just want to give up, say, absolutely not. I'm going to fight for myself and others to make their lives a little bit better, which, um, the resiliency of our Lupus Thrivers just amazes me on a regular basis.
13:47It's humbling. It's humbling. And, uh, I've seen it firsthand. And so, Jenny Prince, we thank you for the continued work of the Lupus Foundation in North Carolina. Your website is lupusnc.org, lupusnc.org.
14:05And, uh, as you found out, or as we did find out, you've got, uh, a ton of activity and resources right here in the Fayetteville and Cumberland County area.
14:18Bless you as, uh, you continue to fight for the Thrivers. Bless the Thrivers as they continue to fight for themselves.
14:26And let's keep up, uh, you know, the, the positive mental attitude battle toward this debilitating disease, even though there's no cure.
14:35There's lots of fight in the people that have it. We thank you for joining us today.
14:41Thank you so much. And thanks for having me.