[Music] there are many mysteries in the world and when they're Mysteries there's a lot of energy that's put out to try to solve the mystery and then when they solve the mystery they want to understand the origination of those Mysteries well today's mystery we're going to focus on is lupus the conversation we're going to have today is a serious conversation but it's a conversation of Hope and happiness Tama Griffin who is a lupus thriv is going to explain to you life with lupus how to be a thriv with family friends and just in life now I I I hope that you take the time to take some notes and find out how you can be a contributor to help solve this mystery and get more people to thrive and survive and move forward while having lupus so with that being said let's go and today on voices I have an an episode and a topic that's near and dear to my heart it affects many people in the world but it specifically affects my family very important people in my family uh get your attention and my attention on the things that we probably should know more about uh to make today joining us is Tama and uh she is going to give us information about lupus I think this is is a very important thing to know about going into the holiday season but any season and I think she's going to give you a great deal of information so Tama thank you for being here uh and I like to say to everyone no one can give a better introduction for themselves than themselves so if you would introduce yourself and let the people know who's listening thank you thank you Louis my name is Tama Griffin I am a lupus striber I'm 51 years old I'm a mom of two sons RJ who's 24 Ryan who's 19 I am married to Robert Griffin for the past I think 26 years 25 or 20 26 because RJ is 24 so going on 26 I live in Charlotte North Carolina um a native of Brooklyn New York and moved to Newark New Jersey and have been in now for 25 years that's awesome and it's it's interesting because uh just on a quick thing I lived in charot as well with you and you you you gave me the greatest introduction to the city you were like you know sort of the big sister second mom for me so you made me enjoy Charlotte even more when I was there so I always I'm I'm excited when I I come back to visit well that's awesome I'm glad it was a good experience for you we still enjoy Charlotte 25 years later so yeah well it's it's a much different city than one when you get came there so I'm I'm sure you have appreciate the growth that's come with it oh yeah now you made a mention about something that I think is important now I'm going to ask what lupus is but you specifically said uh you are a thri and I think when I when you first gave me information about lupus I thought that was an absolutely marvelous thing that uh the lupus I'm not sure who created the Lupus Foundation or whoever comes up with the support system because it's a beautiful name so can you explain why uh the loop Warriors are called thrivers well you know you often hear people say they're a Survivor when you survive something yes you've got through that thing but when you thrive that means you're continuing to live your life to the best of your ability with whatever disease that you have been diagnosed with so that's why we like to say Thrive because we still want to kind of live our best life in spite of whatever that may be for that person so thriving is just more of a as you said a warrior um you know type position that we take with battling this disease instead of surviving it thriving it and so they go begs the the most direct question so what exactly is lupus and how does someone get lupus well lupus is a chronic autoimmune disease it causes inflammation which can damage major organs such as just the heart your lungs your kidneys your skin and brain but lupus has many different symptoms so it affects each person differently so among the most common symptoms for um people who are diagnosed with lupus is extreme fatigue and body aegs lupus is unpredictable because it's a disease of flares which means when your symptoms worsen you feel ill and remissions when your symptoms improve you feel better lupus can range from a mild case of Lupus to life-threatening but symptoms usually can be managed you know with proper treatment lupus is not contagious so you cannot catch lupus from someone or you cannot give lupus to anyone and lupus is not like or related to cancer or HIV so it's something that you know probably I would dare to say that in the medical world there may be some genetic markers I wouldn't say hereditary markers but genetic markers are predisposed markers for Lupus but um you can you know be diagnosed with lupus even if you take a certain medicine it will give you certain symptoms while you're on that medicine so lupus is called The Mysterious disease because science is still trying to figure out how and why and what causes it wow that's that's amazing because the thing if you think about it you're taking medicine for some oneoff thing and then you find out later that you have Lupus and you just kind of Wonder like well how did that happen so it's kind of a it makes it that much more not only a question mark but scary because you know you you do I don't know I guess you kind of wonder what did you do wrong sometimes because you look at life and you're like well not not even necessarily wrong but what what why me right right exactly and so w with that I think it's important to understand you said about body ache and fatigue um how how does that affect your lifestyle because I feel like you know you probably had a specific lifestyle that you were living and then bang like you know okay you've been diagnosed with lupus and I'm guessing it's sort of where you all of a sudden started feeling fatigued a lot and then you have achy things and now you're like whoa what's going on and you find that out how does it affect your lifestyle well here's the thing I tell people this all the time even when I you know go out and speak to others making awareness of Lupus I feel like I had lupus since maybe middle school or high school I was just never diagnosed with it oh wow I experienced things back then that now are making sense um because coincidentally with lupus you cannot go into a doctor's office and they look at you and look at your tassels look down your throat you say ah and they go yeah you have Lupus no you have to get um tested by way of you know blood blood work that is the only way so as a as a young child Middle School I remember dealing with feeling tired sometimes feeling achy hair loss running a fever for no reason at all going to the doctor and they're just saying oh it's just a little fever spell maybe a virus and they'll give me something I remember this as a as a middle schooler very specifically and then in high school I remember dealing with some hair loss and then at some point a little weight gain and a weight loss just always feeling kind of tired having to perk myself up and then in college you know with my studing and sometimes cramming and just wanting to sleep I slept a lot you know and I had to keep myself awake you know for different things so as I got older and started looking back on symptoms that I had you know as a middle schooler a high schooler and then a college student I feel like I've had lupus for quite some time I was just never properly diagnosed wow so to answer your question as far as how does it change your life with fatigued drastically because here's the thing if you know you have this week planned or even a day plan and you get up in the morning and you can't stand on your right foot which has happened to me plenty of times wow or I can't seem to really wake myself up or I feel like a Mac truck has run over me and I know the day before I did absolutely nothing then I have to change those plans because can't function you know if I can't if I don't feel well if I can't walk if I'm achy if I feel like I have the flu because a lot of people that I come across say for them sometimes lupus feels like you just you just don't feel well you may feel like you're catching the flu so just imagine feeling like that and trying to run through your day um and it really affected me with the type of work I did because I worked for the the federal government for many years and um I had just got promoted to this great position to be a detention officer and um that's when I got diagnosed with lupus and it totally turned my world upside down well I can imagine because I mean you're a mom you're married you have a family you're working and then I just I I I could I can't even imagine what that would be like I mean so with that like what kind of um uh research ha has been done to sort of find the best treatments because I'm I'm sure there are treatments to to work with it but then what kind of research are they doing to kind of advance that to help kind of find it faster well um sadly enough we just received maybe and don't totally quot me on this I think it was maybe in 201 maybe let's go 2010 2011 lupus um thrivers have just received a drug that is just solely F lupus called bista okay and it's a drug that you can get by way of infusion or injection now that is the first drug that was designated just for Lupus in 50 years when it came out sometime 2010 2011 before that it was prazone and the lupus Community we call that the wonder drug because you know that fights inflammation that's an anti-inflammatory drug pretone okay but on the other hand it has these horrible side effects you know so the the drug that we have now as far as research is prazone and you know we're running with that but unfortunately it's not for everyone and when I say it's not for everyone that means that you um it's really for someone who has lupus but it's not really affecting major organs so to speak you just you have Lupus and you know it's you take this drug and it's supposed to like put your symptoms in remission to the point where you almost feel like you don't have it and then also with this drug I say it's not for everyone is because you know when you have a new drug you have clinical trials well sadly enough a African-Americans don't participate in these clinical trials so when they were giving the results of this drug and how well it works it was only it wasn't based on you know many African-American now that's that's a question also because I know for instance uh sickle cell and there's certain uh diseases that affect African-Americans more so than others is Lup is one of those um um I guess diseases it would be the correct way to say it well lupus is actually it's it's funny 90% of those diagnosed with lupus are women okay let me just start there wow okay um between the ages of 15 and 44 but lupus can also you know Ur in children teens and Men African-Americans we develop lupus at a younger age and the disease may be more severe for us uh than the general population so as many as one in 250 African-American women will develop lupus so thus to my point when I told you I was pretty sure I had lupus when I was younger you know I just got diagnosed as an adult and then with Hispanics and Latinos um Al lupus develops at a younger age and the disease may be more severe for them like in the general population and oddly enough lupus is much more common in Native Americans than in other e ethnic groups and um May May Ur some tribes and nearly 10 times more often uh than the general population so and here's another Point lupus is more common in almost all Asian American ethnic groups no matter their Heritage uh and their general population so it's kind of really spread out but I my personal Journey with lupus I come across a lot of caucasians with lupus okay that that and that's interesting because I know sometimes it's the sort of the genetic markers of eth ethnic groups that causes that but it's it's interesting that you're saying that most uh it it happens in all ethnic groupings but there's a greater prevalence in the minority groups yes and so that that that may say something as well uh as far as the research goes so that that actually becomes a little concerning when you say most of the um the the um Tech trials are not on sort of minorities so yes so that it feels like that may be sort of a uh uh a backwards way but I mean there're they're still trying and I still think that matters so it leads me to the next point of awareness so again when people uh first learn about diseases they don't know anything about it they automatically assume being contagious which you've covered but then then they just really don't know how to support that person for instance uh a friend of mine and you know them as well my friend Al his his has and like I didn't know what it was every time I saw his mom she was fine to me like I never saw her have any problems or anything like that but every now and then she would be like away and you know I I wouldn't really ask any questions you know I just ask you know Mom okay but it's it's it's interesting to to say well how do you develop awareness and increase the awareness to help the people who are thriving right yeah and that was totally me when I first got diagnosed um first of all I didn't know what it was um and coincidentally I think the week before I got diagnosed I was reading I never forget I was reading a Essence magazine um and I was reading about an article about this woman talking about her struggle with lupus read the article and I was like a that's so sad what is lupus didn't give it another thought and then shortly thereafter I'm diagnosed with lupus so of course I was petrified and I didn't know what to do and I was in such a crisis when I got diagnosed I wasn't thinking about resources and support when I first got diagnosed I spent three months in the hospital wow so uh it mind you I had only been married for eight months and eight months in my marriage diagnosed with lupus in the hospital for 3 months but while I was in the hospital my aunt Trella was in California at the time and she um took the initiation of finding out what lupus was and finding a support group for me finding a foundation I mean she did all the leg work you know how she is I do I do so she at you know when I was kind of feeling a little better once I got out the hospital she said listen now you're out the hospital this is what need to do to connect there's a foundation for this disease you know you can go meet with people who are like you and you can talk about it and they have different as she wouldn't have done that I don't know if I would have taken that step because I I think I had PTSD for being in the hospital for three months I believe that I do but yeah um a person who first finds out you know of course hopefully they have some sort of support system or tribe around them you know to kind of help them find some sort of resource which was you know found for me and and I found it in the Lupus Foundation and coincidentally I didn't join like a Lupus Foundation in New Jersey like I said once I got the hospital I was just focusing on just trying to be better trying to be a wife trying to just get myself together but when I moved um to I plugged right in to the local uh Lupus Foundation office and so you you kind of gave an example and so you you even kind of timelined you know the the emotions and the feelings so what what would be your opinion on a successful support system for someone who is diagnosed with lupus I think a successful support system is basically anyone who is going to understand not understand maybe try to understand and empathize or sympathize with what you're going through because um my husband I love him dearly he is my best friend he is my number one supporter okay good people I agree he's good people yes he is a good guy he he stuck he's stuck with me but you know he'll never truly understand what I'm dealing with because do he doesn't have Lupus but what makes it so great with him is that he is there for me he sympathizes he empathizes he knows okay he knows my triggers he knows if I'm looking a little crazy he'll listen to me even if I'm talking gibberish or saying the same thing over and over again you know sometimes he's watch me cry like a baby because I don't understand why this is happening to me so I think a good support system is someone who is going to genuinely be there for you no matter what sometimes not say anything at all you know sometimes you know talk you off that you know proverbial ledge but um someone who's just GNA be there for you listen to you maybe take you to your doctor visits um and that's like your close Circle but as far as support I I strongly recommend like you know um support groups I mean we have support groups for everything so there is a support group for lupus and I tell you what I love my husband my children my family everybody um really is there for me when I'm not doing well but when you walk in a room with people who have symptoms or have a disease just like you it's a relief that you that I cannot even explain oh I am understand it's and and I don't I hate the word tribalism does get sort of a negative connotation but in this this is the tribe you want like that's the type of tribe that you you're trying to have you actually may have mentioned something that you know if you could touch on a little bit is your kids so you obviously you have uh children and how did you train them because just I can I can't even imagine being a little a little kid and you know you know mommy or daddy says hey you know Mommy has this thing and now they don't understand understand stuff so as they grow older they start to understand your boys are great guys so you know it's just it's amazing to see how they they had to grow up with that and they still are living with it which is good so I think they how did you train them to sort of become uh a a great support system as well well my oldest um of course he um he was the oldest so he kind of experienced it first he and we talked about this one day we were just talking and I was asking him what are some memories you know that you have from your childhood of you and I he said well for one I remember you always smelling like cocoa butter okay soor I'm like is that a compliment yes it is I said okay he said he said the second thing I remember is you always being in the room and daddy always saying mommy's not feeling good she's taking a nap you know or mommy's not feeling good let's not disturb her mommy's not feeling good we're going to go to McDonald's you know he says so I just always remember the door being closed you know your room don't being inclosed when you weren't feeling well right um he said but when you were feeling well you were great now when he got I guess I'm gonna say I dare to say fourth grade third or fourth grade we had a talk with him and I explained to him you know that you know Mommy has something called lupus and it sometimes makes me tired and sometimes I can't do all the things I want to do with you or sometimes I may not be able to take you to school because I was a stayathome m I've been a stay home mom since 1999 so you know I had to explain to him because those are very important years because I was very active PTA you know Muffins with Mom volunteering in the classroom so we kind of explained to him you know this is why mommy's tired and things like that or or why you know friends moms had to pick him up and bring him home you know um so he kind of got it as he got older but my youngest Ryan uh he didn't have a clue clueless I love Ryan I love Ryan what I didn't you're sick you know and I said well I have Loopers what's that you don't seem like you're sick so it's like he didn't really get it get it because he didn't get the brunt of it you know until he was a little bit older and one time I had a very bad flare with a friend had to take both of them for about three or four days and then that's when Ryan got it you know and we sat down and we had the conversation with him but um it's just a learning it's on the job training with them on the job training and my husband he's a great communicator and that help because he will talk to them about it on their level you know at the time I think if my husband wasn't the great communicator that he is then it really would have been an issue you know and I try to involve them in things sometimes I would take them with me to the doctor so they can understand and see my day you know and see what Mommy deals with you know involve them in different events that I do with the foundation or you know sometimes I would have speaking engagements and I would take them with me like see this is what I do you know this is what I do so and and that makes sense so you actually mentioned um the foundation and so that uh as far as like advocacy groups like what what kind of scope do they do because I'm guessing they they do something along fun R funraising education so what what are the scope or maybe the events or types of advocacy they do specifically for Lupus well the the Lupus Foundation um it's definitely dedic ated to improving the quality of life for all people affected by lupus and they do that through programs research education and advocacy so some of the things that they do are program Services um and that's re a really good tool because they give people like us materials um for Lupus they connect us with Health Care Professionals um they give us authoritative sources of information on Lupus and they have um a lot of educational symposiums like every year we have what is called a lupus Summit and that's where we get together every October either in Raleigh or Charlotte and we'll have the best of the best doctors in the field come and speak with us like the one we just had in October uh last month we actually had a doctor from um Charleston the medical what is it um Medical University of South Carolina yes okay yes he came and he spoke and he was talking about some research that he's doing that he's very passionate about and we always have like best of the best rheumatologist any type of specialist and then we also have for people who may not be as mobile the foundation offers um expert teleconferences so some folks don't even have to leave their home they just dial in and they will dial in on whatever series that we're having like actually today we're having a series on joint replacement with lupus and you can just dial in you know and then in December we'll have something with lupus and overlapping diseases um and not to mention the support groups that we have the foundation that is here is for the entire state of North Carolina so the the office that's here in Charlotte takes care of the entire state so with that being said we have support groups in almost every County um of course meinburg County and uh Wake goboro fory County so we're kind of covering we have like let's see one two about 10 support groups going on in the state of North Carolina and that's something people can attend once a month and uh get that support and so w with that support the one event that I know that I remember uh and I'm pretty sure the Lupus Foundation does it is the Lupus walk which I think it's in May normally right yeah for it fluctuates it fluctuates this year it's going to be in May but last year was in April oh okay but what I love about it is is that well F first it actually it's it's aware where it's actually like a party and I love that part but the second part is the actual walk is interesting because they have two tracks and I I know I always do the long track because I just get excited by that because I like doing things like that but I think it's really fun because um when was that started and like what's the purpose of the Lupus walk itself well the Lupus walk if I'm not mistaken I want to say I've been to almost every walk I've been doing it for over 10 years so let's just take it would take 10 plus year as it started and that is for fundraising and making awareness like you said it's like a big party but we want to also make people aware of Lupus you know um so we do it by way of the Walk um that but that's a big fundraiser we usually have normally we do our walks in three different locations of course we do Charlotte and then we have a big Walkin Rock and then we have one in fville okay so it's like a circuit and then we we fund raise um uh for that because that helps keep the foundation going the foundation is nonprofit so all these services that are offered to lupus drivers are absolutely free so uh you know you have to keep the ship going it's a very small staff of three um but you would think that it was the very large staff the way you know the walk is is produced and the production that they do for it but that's one of our major fundraisers another fundraiser we have is called the lupus Mar garala um and that's we have that at Charlotte every year and that's coming up I guess that's in February of 2020 and that's a very big fundraiser I think the tickets are about 150 a person um we go down to Founders Hall Downtown Charlotte everyone dresses up you know looking wonderful everyone wears a mask but most importantly again we're sharing awareness and then we have donors you know people who are very vested and you know want to see you know uh a cure and and and want to uh support the research so that's one of our our big fundraisers too and then in August we also do a golf tournament um and Valentine so we kind of try to do fundraisers and categories like you know things that people like to do some people who are into you know exercising healthy let's get out here that's the walk you know the Maru you want to dress up you want to have a good time you know that's the Marty Gro you know the golf links if you're a golfer so we try to hit all aspects but also sharing awareness and raising funds and what I find really interesting is you mentioned the Marty Gro and the first thing that comes to my mind when I think of Marty gr the colors the purple and the gold and the and the green and then when I remember the first time I did the Lupus walk with you it was it was all purple and your team is called team purple hearts so what's the reason behind the purple because sort of I think when I think purple I think like royalty so what is the reason for it I don't know who said the color for Lupus was purple that's a very good question I don't know I don't know where that purple came from because the the symbol color purple and then the symbol for Lupus is a butterfly and why is it a butterfly well because for some who have Lupus they will get what is called a butterfly rash on the front of their face it'll go under your cheeks and it'll come around your face it'll skip the bridge of your nose and if you look at it closely it looks like a butterfly wow that's that's amazing and many years ago when lupus was first you know first you know discovered and people were being diagnosed and they still refer to it as the wolf um the wolf the wolf I don't know how that occurred I think it's something like you know a wolf can sneak up on you and you know oh yeah I get it yeah so I think that was but we kind of not sway away from the wolf CU that's kind of scary you know yeah yeah yeah but it's true you know you think about it um it's a sneaky disease it's mysterious sneaks up on you and once it has you you know it has you but we we like the butterfly it's a little bit more gentler yeah and and so I asked it because you you meant uh you mentioned doctors and the research so is there have you gotten any or what's the nosis or the forecast that reearch researchers have found to let you know like the progress they're making towards well obviously they have a new drug but like sort of helping maybe diagnose earlier or help relieve that what's the forecast on that do you know not exactly um it's always a moving train with moving Parts um just recently when we went to the Symposium um I did come across a um company that is doing very detailed research on something called lupus nefritis which is uh lupus in your kidneys and they they have a whole program pamphlet here having um to share with people the awareness of understanding n nephritis and with that they offer you know for you to receive news news updates newsletters about their research and and as well as clinical trials so um it's just really you know I really don't have any new new information the the Doctor Who Came From um Charleston he was talking about some things that he saw with some research that he had done um but I mean of course on The Cutting Edge to a to a point um because they still can't really nail it down you know to prevent it so to speak okay so two more questions uh the first one is is if someone is looking for information so where what what are the websites or the contact information that a person could go to to find out more about lupus and potentially help with the fundraising and research process yeah um not a problem well I belong to the Lupus Foundation of North Carolina so if you want to get information you can go to www lupus l p nc.org so that's www. lupus nc.org and if you want to email the foundation you can do that at info lupus nc.org and then there is a national um our national office is in Washington DC and I'm not not sure of that website so I don't want to give you the wrong link but I'm sure um your guest can Google yeah and they can probably connect through the the North Carolina site probably as well yes you can go that way and then we have a telephone number as well um a tollfree number is 877 849 8271 and that's for the Lupus Foundation uh North Carolina chapter office okay and so I make sure I'm going to list all that on there as well so the ultimate question is uh a final thought for you and I I I love to have all the guest do the final thought because it can be about anything it can be about the topic that we just discussed or anything that's really on your heart the reason I wanted to do this episode now is we're we're at the time where people are being with their family and you just want to kind of spread that cheer and appreciation of your family so I felt like you would be a great guest for this and as we're family I I just want to show the appreci of knowing that you're a th so any final thoughts you have about lupus or and or anything else I will leave the last word to you and I again thank you for participating yes thank you well I will say this is a mantra that I have I have Lupus but lupus does not have me so I will say this um lupus has changed my life but a lot of people look at me a little different when I say this but I'm grateful for Lupus this is you know a season of being thankful and grateful and two of my most prized possessions are my children and the reason why I say I'm grateful for Lupus is lupus made me slow down I was on a fast track of becoming a corporate attorney in New York City um never never to leave the tri state area so me being diagnosed with lupus slowed me down enough to smell the roses s to speed I got married I met I might not have never met my husband if I was diagn if I wasn't diagnosed with lupus wow so it it make me slow down it changed you know my lifestyle um when I first got diagnosed I went to see a iridologist that's the doctor who studies like how sick or well you are through the pupils of your eyes and I have I was newly diagnosed and he said you want to live longer with this disease I said absolutely he said you need to leave New York you need to leave New Jersey Connecticut get out of char state area move to North Cara L I was like H North Carolina and this is how I know this was all predestined for me this was a journey for me because after he told me that I kid you not a week or two later my husband comes to me and says my job just made me an offer to move to North Carolina do you want to relocate wow mindblowing okay so again I say you know I have Lupus but lupus doesn't have me if it wasn't for Lupus I wouldn't be in beautiful North Carolina in the beautiful city of Charlotte I probably wouldn't have been married to my husband and I've definitely wouldn't had these boys that I was forbidden to have so it made my life slow down it changed all my plans but I will say for the better that's beautiful that that's absolutely beautiful and I'm thankful and I'm thankful for it