- 4 years ago
Jenny Prince | Bigger Picture
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00:00The bigger picture is on this Beasley Media platform. I'm Baze Jr. And joining me today
00:09on the Zoom is Jenny Pritch, and she is the CEO to the Lupus Foundation of America. Good morning.
00:16How are you doing? Good morning and happy Lupus Awareness Month. Thank you for having me today.
00:22Most definitely. Now, for those folks that aren't familiar with lupus, what is lupus?
00:28Lupus is an autoimmune disease, and in its simplest form, it's when the body attacks itself
00:35because it thinks healthy organ and tissues are unhealthy.
00:40All right. Now, what is the Lupus Foundation doing to bring awareness to lupus this month?
00:47Well, we have a lot of things planned this month. We're doing everything from educational seminars.
00:54We've got several of those plans. Each week, we have a different focus. Week one will be symptoms
01:00and diagnosis. Week two will be impact on the body. Week three will be lupus and quality of life. And
01:07week four will be research and treatments available for lupus. We have a lot taking place on all of our
01:14social media platforms, including testimonials from people that have lupus and spotlights on
01:21certain thrivers. That's what we call our constituents, our lupus thrivers, as well as
01:26sharing facts throughout the month about what lupus is, how it can attack your body and be different in
01:32every single person. Now, how long does it take to get a lupus diagnosis?
01:39Well, because lupus can present in so many different ways, the average time for diagnosis
01:43is five to seven years, which is critical when you think about the treatments that need to take
01:49place because the quicker the disease can be diagnosed, the sooner the treatments can start.
01:55Now, what are some of the signs that you may need to get checked out for lupus?
02:01Well, there's a lot of different signs. And again, this goes back to why we call it the cruel mystery of
02:06lupus because it can present so differently. But some of the most common signs would be chronic
02:13fatigue and pain in your joints. You may have a rash. A lot of people develop what
02:20we call the butterfly rash that looks like on your cheeks. And like from your cheeks around your nose,
02:26people have seen a rash that looks like the shape of a butterfly wings. There's that.
02:33And then the organ function, especially your kidneys, that's another thing to be aware of.
02:38So is that the reason why you guys adopted the butterfly as your symbol?
02:45That's exactly why. Yes, it is.
02:48All right. Now, what's the deal with the walks? When and where are the walks going to take place?
02:54Well, we are so excited to be doing walks in person again this year. We, thanks to COVID,
02:59had to take two years off to do our in-person walks. This year, we are coming out slowly and we
03:05are doing our first walk on October 16th. We are doing what we're calling our statewide walk. It
03:11will take place in Charlotte this year. Of course, in future years, we hope to expand again. But because
03:18our constituents have autoimmune disease, they are our most critical people in the state that we need
03:26to be careful and mindful of of their disease and how COVID-19 can affect them. So we're going to do
03:32one walk this year on October 16th. There will be a national virtual walk on November 17th, which we will
03:38take part in. And of course, if people want to have walks in their hometowns where they live, we're going to
03:43support them in that as well.
03:46All right. And I know Cumberland County has a support group that if someone wants to reach out to that support
03:56group, what's the best way to do that? The easiest way is to contact us either through our social media
04:03or through our website, which is lupusnc.org. We do have an active support group in Cumberland County
04:11that is just wonderful. And we have wonderful volunteers that lead that support group. And if
04:17that's something you're looking for, we highly encourage you to get involved and find a group of
04:22people that you have a lot in common with. One of the things that I would give a big shout out for
04:28that support group is I have so many people tell me that they don't want to join a support group
04:34because it is, they think it's very doom and gloom and it's just going to be sitting around and
04:39complaining about our symptoms, but that is not the case at all. There are wonderful friendships,
04:44there are supports, there is education that takes place, there is sharings of tips and tools
04:49to live with the disease. And it can be a very uplifting experience. And we've had people tell
04:56it's not just in Cumberland County, from across the state, that they find that the support groups
05:02becomes life-changing because they find someone who understands what it feels to live with lupus.
05:07Now, how important is that a support group? Say, I'm new, say if I was newly diagnosed with lupus,
05:19you know, what, would you recommend that I, they, they join a support group?
05:27I absolutely would. And there's several reasons for that. One is lupus can be a very isolating disease.
05:34And because the symptoms tend to be more internal than external, a lot of our lupus thrivers will
05:40tell us that, well, you don't look sick. Why are you tired all the time? Why don't you do anything
05:45with me anymore? Are you sure you're in pain? You don't look like you're in pain, but to find someone
05:50that knows what it's like to walk a similar path and be on the same journey and really make a connection
05:56with, it can be life-changing so that you're validated in your feelings, as well as find someone
06:03that may be a good source of, oh, I've seen this physician or this dermatologist or this
06:10urologist, whatever that may be. And things like, this is a great clothing to wear that protects you
06:15from the sun. And there's great little tips and tools like that. And our support groups are also
06:20for caregivers. So if you are, you love someone with lupus, maybe a spouse or a parent, a child of
06:28someone with lupus, this is a great way to gain better understanding and support for the journey
06:34so that you have a real connection and community that makes this diagnosis easier to not only
06:42process, but live with successfully. Now, May is Lupus Awareness Month. What are some of the other
06:49activities that the Lupus Foundation has going on this month? Absolutely. Well, we have several
06:55things planned. We, um, on Mondays on our social media, you'll see Motivational Mondays, lots of
07:01great, um, tips and exciting things. It's a kickoff the week. Every Tuesday, there'll be a
07:07testimonial from someone living with lupus. Wednesday, we'll focus on our walks through walk
07:12Wednesday. Thursday is Thriver Thursday and Friday is Fact Friday. We've got several different webinars
07:18planned for education. One will be on May 5th, which is Introduction to Lupus and Lupus
07:24Nefritus. One will be May 11th, which is the Let's Talk About It series. That's the role of your
07:30rheumatologist. We've also got one on May 17th called Caring for Someone with Lupus. Um, one of
07:36the big things I want to make sure that we're up is May 10th, which is World Lupus Day and also Pop,
07:43which is on Purple Day. We encourage everyone to wear purple, which is our signature color.
07:48And, um, hopefully people will ask you when you're out and about around town, why you're wearing purple,
07:53as well as we hope people will post this on their social media and share while they're wearing
07:58purple. Um, the last webinar I'll show you that we have on May 24th is Teens with Lupus.
08:04And that's another great educational opportunity to learn more about how lupus may affect a teenager,
08:10but lots of great things that we've got going on and, um, ways to get involved and, um, really learn
08:19more about the disease, join our, join a community and, um, celebrate our thrivers and the journey
08:25that they lead. Live, I'm sorry. Live. Now for those folks just joining us, do you mind recapping
08:31what we've been talking about this morning? Sure. Absolutely. My name is Jenny Prince and I'm
08:35with the Lupus Foundation of America, North Carolina chapter. We are kicking off Lupus Awareness Month
08:41with Gilbert today. May is Lupus Awareness Month and we are offering, um, lots of different
08:47activities and educational opportunities and a way to connect with other thrivers. Um,
08:52all this information can be found on our website, which is lupusnc.org, as well as on all of our
08:59social media platforms, which we are on LinkedIn, social media, I mean, um, LinkedIn, um, Twitter,
09:06um, Facebook, Instagram, you can find us just about anywhere. Um, we also do have an active
09:13support group in Cumberland County. So if you're in this area, we want you to get involved and you
09:18can do so by reaching out to us either at our office or on our, um, website again, lupusnc.org.
09:26Now what's the best way to get registered for those webinars? Um, all that information is on our
09:32website. And so you can register for, um, those, they cost nothing. They're, um, all provided by those
09:40who support us financially through donations. And I'll tell you what those are. Again, the first
09:45one is on May 5th, which is introduction to lupus and lupus nephritis. Lupus nephritis is lupus of the
09:51kidneys. We've got another one on May 10th, which is, um, understanding biologic. We've got one on May
09:5811th, which is under the role of your rheumatologist. May 17th, caring for someone with lupus and on May 24th,
10:07teens with lupus. So lots of, we have something every single week, um, as a webinar. And again,
10:13you can register for that on our website. We also will have links on our Facebook account that you
10:19can register that way too. Now, before we get out of here, is there anything else you'd like to add?
10:25Well, I just want to thank everyone.
10:29We've had great support in Cumberland County and Fayetteville. Um, we want you to register for
10:34our walk, which will be in October this year in Charlotte. And we just encourage you most
10:39importantly to put on your purple on May 10th, which is lupus awareness day. And for those of
10:44you that have given generously to us in the past from this area, we are very thankful that for that
10:49and hope you will continue to do so in the future so that we can provide programs and opportunities
10:53for those living with lupus and eventually find a cure to this dreadful.
10:57Now you just mentioned, um, that folks that had donated their, um, and there's some of their
11:07treasure and I like to call it the three T's time, talent, and treasure. If, um, if someone wants to
11:13donate some time, talent, or treasure, how can they go about doing that? That is a great question as
11:19well. Um, again, our website, you can contact me, Johnny France. We are, um, always looking for
11:25volunteers that can donate one of those three things or two or all three. Um, we get just as
11:31much value from someone that can give us their time experience. For instance, maybe it's someone
11:38that is going to donate their expertise skills and marketing to help us, um, further our reach
11:43and awareness campaign or someone that wants it's easier for them to support a walk. And we have
11:48naming opportunities, entitlements that come with that as well as their time, um, of, um, you know,
11:54maybe they're, they prefer to be the worker bee and get a donation of granola bars that we can have
11:59at our walk. Any of the, all those things are important, equally important and all are needed.
12:04All right. Uh, you guys at the Lupus Foundation have an open invitation and come back whenever you're
12:10like. Great. Thank you so much for always supporting us, Gilbert, and helping spread the word. We
12:14appreciate it. All right. Thank you. Have a great day.