We the 4A’s Sisters Lupus Club of Lafayette, La would like to Recognize and Spotlight our Lupus Warrior of the week Ms. Lakisha Robinson of ATL.
PS: show your ❤.
She was diagnosed with Lupus in 2005. Later it was determined she had symptoms since the age of nine. Lupus has cause her to have four TIA’s which are Transient ischemic attacks, which are stroke-like attacks the lead up to her having a stroke.
Lupus has also attacked her skin, heart, eyes and hair. If she wasn’t a confidence woman Lupus would destroy every aspect of her life. Although Lupus has and can affect many organs. We as Lupus Warriors and Survivors MUST continue to find a way to stay positive, be encouraged and continue to stay on the path of good healthy living. With that being said Lupus has taught her to quote “Trust GOD and keep pushing forward because Lupus doesn’t define me”.
“MAKE LUPUS LOOK GOOD is her Non Profit organization Est: April 2020.”
Her goal is to make lupus patients look and feel good by giving makeovers to the ones that need a boost in their self esteem.
The ones that feel frustrated and depressed about the way that lupus has affected their appearance.
Her goal is to make lupus patients look and feel good by giving makeovers to the ones that need a boost in their self esteem.
The ones that feel frustrated and depressed about the way that lupus has affected their appearance.
I can’t even remember when it initially started going south for me. It started at some point in 2014, with me being tired a lot. I would get tired and out of breath in a matter of minutes for no apparent reason, my heart would be racing. I basically took it as just being unfit. Since mid-2014 I was back and forth to the doctor with those same symptoms and additionally I had developed pain. My entire body was aching. I did numerous blood tests here in Anguilla only to be told that I’m fine, it’s in my mind, I’m so fine I can be in ‘Miss World’. I went to St. Maarten to see a doctor, he had me run tests as well. After the results, the doctor told me to drink more water and play a sport, the only thing he prescribed that day was Vitamin D. I was confused, here I am in the world of pain and a Medical Doctor is telling me to drink water and play a sport. As time progressed my health started to deteriorate but every day I got up, got dressed, and went to work dragging. Money had to be made, bills had to be paid and I had to eat. My coworkers would constantly ask what happened to me or where was hurting me? November of 2014 I took my mother on a trip to Nevis despite my usual pain. One day I was in so much pain that I started to cry, immediately the expression on my mother’s face changed to that of worry. She did not like seeing her daughter like this. It was a Wednesday and we were scheduled to leave Nevis on Sunday but she changed the flight to Friday, I tried to tell her it didn’t make sense to pay to change a flight 2 days earlier, I would be ok, but she would not hear me on this. One thing is for sure, when you’re sick you learn who really is to be considered “ride or die.” Not all women that give birth embrace their role as mothers, while some relinquish such roles once the child reaches the age of 18. My mother would risk her life for me if she has to. Ramona Brooks, I would move the universe for you if I could. I came back to Anguilla, where at this point I was engulfed with pain, my skin was pale, and all I wanted to do was lay down. I did not solely go to a doctor this time, I was taken. On this doctor visit, I was given two weeks of sick leave and an order for blood work to be done to test for gallstones. I did not have these tests done, as I knew my issue was not gallstones. I returned home and for those two weeks straight I vomited up every single thing including water. After the two weeks when my sick leave was up on December 1st I was taken to Hughes Medical to see Dr. Rhona Hodge, I had blood work done as well as an ultrasound on my chest. The blood work came back and the doctor said just as she suspected ‘LUPUS’. She asked me if I knew what that was, which I did not. She ordered more blood be taken to send off to America to be tested before she diagnosed me. At this time I was weak and had to be pushed around in a wheelchair. The lab technician could not find any veins at this time to draw any more blood, my veins had collapsed. Dr. Lo himself had to assist in this process, he used a needle for babies and drew blood from the part of my hand just above my fingers. He asked me what I was doing there? I was confused because when you’re sick that’s what you do, you go to the doctor. He then responded and said I should be in the hospital. Which Dr. Rhona Hodge did mention earlier that day. My results at the time showed I had Nephritis, Arthritis, and Serositis. Systemic lupus erythematosus (SLE) is an autoimmune disease. In this disease, the immune system of the body mistakenly attacks healthy tissue. It can affect the skin, joints, kidneys, brain, and other organs.
Unfortunately for me I was admitted to PAH for 5 days and placed on drips, as well as I started my long journey of medication. I literally went to the hospital in my favorite pants fitting me perfectly and came out with it dropping off. One morning the nurse came in about 6 am and told me when I’m ready I can go and bathe. I said ok, but in my mind, I was like she seriously doesn’t know I can’t do that myself. I waited until 11 am when my mother came to visit.
When I came out I was much better pain-wise, however, I was as we would say ‘weak like a dog’. I could hardly get out of bed, I could not dress myself, I could not open a bottle of water, and I could not walk without support. Eventually, I started dragging around with the use of a cane. Many days I wanted to give up, but giving up was not an option, it seemed like a lifetime I waited to be an aunty, I wanted a niece to be specific and this was finally coming through. Even though the sex was unknown it was my goal to meet my niece. I kept on fighting, then my niece was born. Literally one of the best days of my life.
Each and every day was a struggle for me, it was rough getting up and getting started, but I got it done. As a result of people not knowing what I went through and some not caring to educate themselves, they underestimated my pain and behaved as if I was making it up or looking for pity. I could remember one time my right hand was hurting me. I literally could not hold a pen or anything, I had to use my niece’s blanket as a sling. I still went to work, typed with my left hand, signed with my left hand, crookedly but I got the job done. This is what we call determination and perseverance. Whenever I wanted to give up and I felt as though I was given too much to handle, I would cuddle with my niece or look at photos of her, and all would be well. That child means the world to me. My legs used to always hurt me, so if I had pain when I breathe in and I said owwww, she would ask if “Tantie leg hurting”. I spent so much time, money, and effort grooming my locs from somewhere in 2011. March 2015 I ended up having to cut my hair / locs once again because either the disease or the medication was causing my hair to thin out. God is good. Within 1 year I almost had a completely full head of hair and within 2 years my hair was longer than ever. I kept my lupus off Facebook for exactly one year. I am not a person that cares what people’s opinions of me are, and this is one of the reasons why I am strong beyond imagination. A family member in Nevis had messaged me and told me someone asked or told her that I had Aids. So, while I responded, “you should have told her if her man stays away from me then she would have nothing to worry about. I then decided if they wanted to spread that I have aids let them do that, so I kept my actual diagnosis off FB. I started to post memes on my 1 year anniversary on 1st December 2015. There are a lot of people that wish you well but don’t want to see you well. At the end of the day I fight for myself, I live for myself and I give thanks and praises to God for how far he has brought me since 2014 and he continues to carry me. I was placed on a waiting list at Hughes Medical centre to see a rheumatologist in 2014. Up to this day I have not seen one arrive on the island. I however made my first venture to Puerto Rico in 2015 to see a rheumatologist. He ordered a bunch of blood work that I would have to do in Anguilla, due to the length of time my trip was. The Dr. told me I could fax, call or email and he will talk to me. I called so many times, no response. I personally had them delivered to him by one of his patients with my email and phone number, I never got a response from him. Waste of my money and time. In Anguilla, there was the usual 3-month doctor visit at the clinic where I would have blood work and other tests done. Dr. Richardson had been helping me manage my disease since I was admitted to PAH and through my doctor visits at the clinic. I grew very fond of him because he always listened to my complaint and tried his best to assist. In 2016 on one of my visits to the clinic I met with another doctor who to me wasn’t really listening to what I had to say, it appeared to me that he was more concerned about seeing the rest patients so he could go home. Shortly after that, I learned that Dr. Richardson was stationed at Princess Alexandra Hospital ward only and would not be at the clinic anymore. At this point I decided to postpone my 3-month checkups at the clinic, however, I still had my tests done regularly. Anyone who knew the old Tashanna knows that when she hit a dance floor she could go from night till morning. August 2016 I attended EWS, eyes wide shut, this event started sometime around midnight, I got there about 7 am. I wanted so badly to enjoy Burning Flames but I knew if I went too early I would not survive. Sadly enough when I got there Burning Flames was performing their last song. I had a friend staying with me from St Kitts. I gave her my phone and asked her to videotape me ‘TRYING’ to enjoy myself to 1 song. I posted this video to my Facebook. Would you believe someone had the audacity to take my video and email it to the Chief of Immigration asking her if that is her sick officer? I wish sickness on no one, but their day will come. “Dearly beloved, avenge not yourselves, but rather give place unto wrath: for it is written, Vengeance is mine; I will repay, saith the Lord.” So from fighting this chronic disease to fighting for certain simple requests for 3 years within different departments and being turned down, I also have to deal with the ignorance of people. Instead, they try to understand or even educate themselves on what I have to go through every day, they are quick to cast judgment. I fight, I fight to be strong, I fight to survive, I fight to get things done, most of all I fight to be me. Around the ending of January 2017, I started developing pain in my right thigh/hip area. I took it as normal pain related to Lupus and thought that it would eventually stop. In May I went to the Dr. with it, he called Puerto Rico to get me an appointment to see a Rheumatologist which my appointment wasn’t until the end of June. I ended up going to St Martin in early June and having an MRI done there. The results showed that I had Osteonecrosis of both my right and left hip. When I went to Puerto Rico at the end of June, I was referred to an Orthopedic surgeon. He said my scans weren’t very good, so he had me do an MRI and X-Ray of both my right and left hip. The results showed that I needed to have surgery on my right hip as soon as possible and on my left hip to try and eliminate the need for a total hip replacement in the future. My right hip was at stage 3 and the left hip was at stage 2 (Osteonecrosis). The procedure I needed to do was called a core decompression. When osteonecrosis of the hip is diagnosed early, core decompression is often successful in preventing the collapse of the femoral head and the development of arthritis. Core decompression is often combined with bone grafting to help regenerate healthy bone and support cartilage at the hip joint. I returned to Anguilla and then made plans to go back to Puerto Rico and have surgery on my right hip.
I fight, I fight to be strong, I fight to survive, I fight to get things done, most of all I fight to be me.
-Tashanna Brooks, Lupus Warrior
I had surgery in Puerto Rico on the 10th of August 2017, where I could not bear weight for 4 weeks. The procedure was ambulatory, meaning I was in and out of the hospital. When I got back to the hotel room my sister went out to fill my prescription of pain meds, I can recall screaming at the top of my lungs because I was in so much pain. The first few days were a struggle for me to get out of bed to use the bathroom, for the period spent in Puerto Rico my sister played an integral part in assisting me where necessary. I don’t like to harass people so this too strengthened my will to get better, by the 3rd day I was fully operational on my own. Using crutches really was a struggle for me due to me suffering from joint pains and having to apply so much pressure on my hands. On my trip back home via Puerto Rico airport I was treated like a VIP, I was chauffeured by wheelchair through security and to the gate which I was boarding. I was then taken by elevator to the bottom floor and wheeled to the plane. I then came out of the wheelchair with my crutches and stood on a lift where I was airlifted to the top of the plane. All of this took place while the other passengers were waiting to board. Arriving in Anguilla I had to hop down the steps on my good foot and I nearly fell as I reached the bottom. Whilst home recovering I used to try as much as possible to move my foot a little further every day or ask anyone around to exercise it for me so it didn’t become too stiff. I couldn’t wait until every Thursday hit so I could count down #RoadTo4Weeks. The day I come off my crutches and the day I get to go to the beach. Would you guess what happened the day before I got to enjoy all of this? Irma struck. Nevertheless, on that 4th Thursday I put down those crutches and I tried to walk. I was moving but I was scared and I was making myself believe that I could not do it. I sat down and cried twice then I took up my walking stick and walked down to my aunt’s house and up those steps. The next day I did it again but without the walking stick. I could not go to the beach but God granted me the privilege of walking again, walking properly without having even started therapy as yet. Man if you had seen my scar from surgery it was a small, neat incision, for a surgery wound I called it “my sexy wound / my Sexy scar” About 1 week after I came off my crutches my wound started to open up with signs of an infection. I went to the hospital and I was given antibiotics and an ointment. The wound continued to open up wider, I went back to the hospital and inquired if it could be stitched back together. I was told a wound older than 24 hours cannot be stitched. I left and went to Hughes Medical where I was given Magnesium Sulphate. This helped, the infection was gone and the wound started to close up. Directly under the surgical area, a bump-like sore appeared and this too was infected, I used the magnesium sulphate and it healed. Then above the surgical would a large area became painful, red, and swollen, with increasing signs that this too was infected. I consulted with Dr. Richardson, and I was sent to the Accident & Emergency room to have an (I & D) Incision and Drainage. I was hooked up on drips with pain meds, then the area was sprayed with what was supposed to be the numbing agent. I felt all 3 slices as the blade pierced through my skin. The Dr. was then squeezing out the infection, when I tried to look to see what was going on he told me not to look, he didn’t think I wanted to see what’s going on. On one of my visits back to change the dressing, I had an appt with the Lovely Dr. George. Only on this visit, I saw I had a deep hole in my thigh. Upon analysis of the results from the swab sample taken it was confirmed that I had an infection called MRSA, which I contracted from the hospital in Puerto Rico. Methicillin-Resistant Staphylococcus Aureus is a bacterium that causes infections in different parts of the body. It’s tougher to treat than most strains of staphylococcus aureus — or staph — because it’s resistant to some commonly used antibiotics. Dr. George gave me the option of coming in every day to be connected on IV for treatment or be admitted. I found it easier to be admitted so the following day I was admitted for treatment.
During this period I was scorned by 2 nurses J.N and T.H, I cried every day for the entire 5 days. (TWO BAD APPLES). However, the nurses that were actually tasked with cleaning my wound and changing the plaster were very professional. Shout out to nurse Honore, professionalism at its best. Nevertheless, it was a pleasure of meeting Dr. George. Man, she was simply awesome, in 1 day I saw why so many people have such good things to say about her. She went above and beyond the necessary to assist me. She is a woman who knows what she wants done and gets it done, with no time for mediocrity in her runnings. Ah man, I wish I had met her a long time before, but she is now a trustworthy friend and confidante. April 5th, 2018, I had surgery on my left hip in Trinidad, no way was I going back to Puerto Rico. I had between 6 weeks of recovery using crutches.
Shortly after I came off the crutches in June my right hip started hurting again, being that it had to carry the weight while my left hip was recovering. I had an x-ray done in mid-June which the radiologist said they saw no changes different from the one prior to my surgery. Therapy didn’t appear to be helping, so after my therapist spoke with my doctor another x-ray was done. The radiologist here said the same thing, they didn’t see anything different.
I again had some x-rays done in April 2019, at this point now he was telling me my femoral head will collapse and since I’m in so much pain I should come to have surgery ASAP. I sent him a video of where the pain is, he decided that the pain might be coming from my spine, that I may have sciatica, and I should have an MRI done. In speaking with my therapist, she didn’t think the symptoms were that of sciatica, however, I did the MRI and it was not sciatica. Prior to having the MRI, I requested an estimate of how much a hip replacement would cost so I could start putting certain things in place. I was not given an estimate, I was told to wait until after the MRI which to me made no sense because whether I had sciatica or not my femoral head was collapsing. I was so frustrated trying to get a quote that I decided I waited 10 months suffering from excruciating pain, I could wait a little longer.
The scans were sent off to my doctor in Trinidad, the doctor called me, he was like Tashanna it’s definitely progressing, your femoral head will collapse and you need a hip replacement. However, he said that I was too young, hip replacements usually last 5 to 20 years and it’s not good to have a second replacement by the age of 50. So he basically said the only thing he was recommending was for me to have the hip injected with pain meds. He couldn’t tell me how long the pain meds would work, so I made a decision not to spend all that money flying to Trinidad to get an injection that may never work. From June 2018 until December 2019 I was either using either a cane or a crutch depending on how I’m feeling, no matter how much pain I was in, I made an extra effort to go to work. I now feel as if I should not have done that because at the end of the day only yourself has your best interest at heart. I had to be up and down on my feet (5) days a week, until July 2019, which at this point I needed 2 total hip replacements. I had actually been trying to get desk duty from before I knew I had osteonecrosis. I just knew I had some serious joint pains, so all of this now is proof that I WAS NEVER FAKING.
Thursday 5th December 2019, I had a total hip replacement done in Trinidad. I was supposed to walk the next day (Friday) in order to be discharged that Saturday. I remember waking up in recovery when they were about to switch me to a different bed to take me to my room. Tears were streaming down my face, the nurse asked what’s wrong, you in pain? I said yes, she administered some pain meds. They took me up to my room and lifted me onto my bed, tears still streaming down my face. She asked again, you still in pain? Once again, I responded yes, she administered more pain medication. She then gave me a control that I could press whenever I was in pain and needed morphine (it was controlled so I could not overdose). The nurses were also administering tables for pain and infection. Usually, if I take anything stronger than paracetamol I start to feel dizzy. Friday when the Physio Therapist came and they put me to sit up, I felt dizzy. She allowed me to sit for a while to try and catch myself, as I stood up and made a step or two, I started to sweat profusely and felt as though I would drop down, so I had to go back and sit on the bed, while they stripped and fan me (the ac was on). When the therapist left the nurse was there aggravating me, I said to her miss every sound making my brain jump, I’m not feeling good. She started up oh because she talked to me my brain jumping etc, I just let out a long ass suck teeth. She got on as if she knew me, I am a warrior, I wasn’t giving up. I had already stopped taking the morphine, so when the nurses came in with the pain meds I kept refusing them. They said I am a very strong person refusing pain meds. When the physiotherapist came on Saturday I was down the corridor and back repeatedly. I know my body and I knew my reaction before was due to the pain meds. Since I did not walk on Friday the Dr. was not at the hospital on Saturday to discharge me, so he called and told me I would be discharged on Sunday. In life, we will fall, but it’s essentially important to get back up and keep trying. My leg was a bit stiff for 2 or 3 days, it was rough getting in and out of the car, but within 5 days I was more flexible and more comfortable with my new norm. I had to stay in Trinidad for 10days total to ensure that there was no complication. I was well taken care of. I couldn’t have asked for a better nurse on duty. It was at this point that I realized God had sent an angel into my life, one who not only respects me and makes me happy, but who always ensures that I am well taken care of. Recovery included walking with a walker and physiotherapy, then I progressed to a 4 legged walking stick. Before surgery my body was bent almost like a hunchback, I used to wonder if it would ever straighten out. About 4 months after surgery I was able to put away my stick up until present. Life is by no means a walk in the park, I have been going through a lot with my left hip. I was supposed to head back to Trinidad in May 2020 to have the other hip replaced, unfortunately, the world went into lockdown due to Covid-19. Fortunately for me having my right hip replaced has decreased my pain tremendously, I only wished that I had already had both replaced to see what version of normalcy I can have. Dancing is or was the thing I love to do most in life and it hurts me not to be able to. Sometimes I feel a little pain in the hip that was replaced, but it’s nothing in comparison to before it was replaced. I could remember bawling long tears because I was trying to turn or get up off the bed and it felt as if the bone had come out the socket and was in the wrong spot.
7 YEARS OF PAIN, 7 YEARS DIAGNOSED. C’EST LA VIE, CE QUI SERA SERA.
-Tashanna Brooks, Lupus Warrior
I was trying to find the date that I forcefully stopped taking my steroids, somehow I can’t find that date written down. I strongly feel though that it was July 2018. I have needed them since on numerous occasions but I prefer to go through the pain than to have to lose another body part. There are a few people that have been diagnosed since I was but are ready to advocate, and that’s ok too, to each his own. I have also been mentoring a few people. I was contacted in regards to a 19-year-old girl about March or April 2020 who was recently diagnosed, she died January 2021. This touched me because I had touched base with her exactly 1 week before she passed. She did express some concerns to me, but I would’ve never expected that. In talking to her, I always felt as though her doctors did not know what they were doing. One minute she is on a specific medication, the next minute they claim it is doing something, soon after she is back on it, with no consistency. I was just contacted in regards to a 17-year old that was recently diagnosed. I have gone through a lot and if I can help someone to get through their fight, then I have a purpose in my advocacy. This is a synopsis of my LUPUS STORY from 2014 until present. I’d like to thank everyone for their continued support as I try to make this disease known.
7 YEARS OF PAIN, 7 YEARS DIAGNOSED. C’EST LA VIE, CE QUI SERA SERA.
4A’s Sisters Lupus Club in Lafayette Louisiana would like to honor and recognize Meet Tenika NiNi Avila . She was diagnosed with Lupus on Dec. 19th, 2004 at 16 years old. In the beginning, the symptoms she experience were rash on her ears, lack of energy, popped blood vessels on her fingers & toes, extreme fatigue, swollen joints, & photosensitivity.
All of those symptoms she experience while her family & her were traveling across the country from California to Georgia.
Although, it took the doctors four months to diagnose her Lupus. Lupus helps her grow emotionally, by physically, & spiritually every day.
Each year she learns something new about Lupus on how to control and manage it.
Tenika is very thankful and blessed to have an amazing support group of GOD, family, and friends to help through her challenging days of Lupus.
4A’s Sisters Lupus Club of Lafayette La. would like to honor this week. She’s Farrah McGhee Rahshandaa Pierson and lives in a small town called McCormick, South Carolina. She’s a single parent to a beautiful 13 year old daughter, Brieannah. She obtained her Bachelors’s degree in Psychology from University of Houston. Currently retired from (VA) Veterans Affairs, as an Administrative Assistant and have over 20 years in the medical field. Her lupus journey began when she was 21 years old, she began having symptoms. After many years of seeing various doctors, Rahshandaa was finally diagnosed in 2017. Upon her diagnosis, she knew she didn’t want to live the rest of her life with this disease. She wanted to find a cure. Because lupus was a disease not known by many people, she became an Advocate and began promoting lupus awareness; by posting on social media and and attending lupus walks. She knew that finding a cure for lupus would have to be in a collective effort, so after seeing an advertisement, for the first lupus Greek lettered sorority, (Lambda Sigma Sigma Lupus Sorority, Inc., founded August 13, 2018, by 20+ year lupus survivor LaCasha Lee of Chicago, IL) she decided to join. Rahshandaa officially became a member of the 2021 Winter Class, along with 10 other women, who have not only dedicated themselves to promoting lupus awareness, advocacy and education, but also a sisterhood! They don’t call themselves Lupus Warriors, we refer to ourselves as Lupus Soldiers, because they are on the battlefield, to find a cure. As a Lupus Soldier, she don’t let lupus stop her. She fights lupus daily and sometimes it knocks her down, but, she gets right back up! She has a daughter to raise and long life to enjoy! And plans to do just that! PS: Let’s show our love !
4A’s Sisters Lupus Foundation of Lafayette, La would like to honor Bettie Carter this week.
A Lupus survivor for 26 years and advocate for 23 years. Chairperson, Health Coordinator, Event Coordinator, Secretary and PR person for “Living Life” with Lupus Support Group, 501(c)3 organization. Lupus Autoimmune Advocacy 2.0 and Tools for Lupus Autoimmune are on Facebook where she also advocates for Lupus.
A mother of 4 daughters, 10 grand children, 2 great grandson, 1 daughter and 1 aunt with Lupus.
Her story started once she moved from California to Chicago August 1994. Driving a truck with all her kids belongings and pulling her station wagon was no fun. She was very healthy, very active and very fit. The first 3 months she felt like she had the Flu or a bad cold, once her face started swelling and cheeks were red she knew it was something else.
She went to the ER about 10 or 12 times within 5 months with pain and swelling and each time she was given creams and pain meds, which only lasted about 2 or 3 weeks. They never could find out what was wrong.
Bettie was able to be pain free for about 2 months and found a job that lasted 3 weeks. One night she went to use the bathroom and the next thing she woke up in ER. She was out for about 2 or 3 hours and when she woke up it was a nurse checking her blood pressure. Bettie asked her where am I and she said, you passed out and you are in ER. After she finish she asked her can I get a blanket and she said yes. As she was comforting her with the blanket she said: Oh, you will be alright you just have “Lupus”.
Bettie asked her what is that, and she said, you haven’t seen the doctor yet, she said no, she said oh well, he will be in to tell you.
Bettie was blown away because she had never heard of Lupus and was very scared. Let’s make this go straight to the point. She found a great Rheumatologist and he keep her Lupus under control for 3 years then it started affecting her bones.
Bettie had to have surgery every other year for 10 years, 3 total hip replacements, a left shoulder and 4 foot surgeries. Her bones brakes easily so, she have broken 2 or 3 of her toes, oh and she can’t leave out, most all her teeth fell out so she have a full upper and working on the bottom. Now when she found “Living Life” with Lupus Support Group her whole life changed.
They have help her to become the person she is, the speaker she became and the advocate she is. She have been in remission for 11 years and she loves what she do for Lupus.
Her family are huge supporters and her grandkids help her more than her kids. She’s very happy to see the platform they have now because when she was diagnosis she could not find one person who knew what Lupus was and if they did they would say, “Oh my friend died from Lupus”. She’s blessed to still do what God called her to do, make the whole world know about Lupus and hopefully find a cure.
Bettie have participated in many events in the Chicago area and surrounding suburbs by speaking at health fairs, schools, churches, hospitals and fundraisers for Lupus. Her organization has received the Proclamation from the Mayor of Chicago declaring May 10th as Lupus Awareness Day in Chicago for the past 3 years. They are also responsible for lighting one of Chicago tallest building downtown, Blue Cross Blue Shield with the words “END LUPUS”. She traveled to Detroit and Milwaukee to help support other Lupus events and fundraisers for the past 6 years. She participated in several Lupus studies at Northwestern Memorial Hospital under her Rheumatologist in Chicago, Dr. Rosalind Ramsey Goldman. She continues to educate the public about Lupus by being a guest on local TV Talk Shows, The AC Green Show V103, Chicago Inspiration Radio 1390AM with Marcella Jones and Living Life In Midlife Radio in Washington DC with Pia King. She spoke at the IL House of Representatives- 97th General Assembly, Chairperson Willie Davis and went to Washington DC to speak to Congresswoman Robin Kelly about more funding for Lupus research. A volunteer for Lupus walks with The Lupus Foundation of America, Lupus Research Alliance and Lupus Society of IL.
“She Women Empowerment Award for Outstanding Leadership and Contributions for the Lupus community from CEO Sandra Epps, Detroit Mi.
Letters of appreciation:
Alpha Kappa Alpha Sorority, Inc.
Zeta Phi Beta Sorority
Eastern Star #151 (past) Worthy Marton Sarah Mayberry
Battlefield for Lupus, Crystal Stotts, Milwaukee, WI
South Shore-Chicago Historical Society
The Gwen Knapp Center for Lupus & Immunology Research
Bettie Carter – Chairperson -PR Health Coordinator “Living Life” with Lupus Support Group firstname.lastname@example.org
GM 4A’s Sisters Lupus Foundation would like to recognize Yarcheka Burns as this week Lupus Warrior.
Yarcheka lives in Nashville, TN with her husband of 10 years and their 9 year old son.
She was diagnosed misdiagnosed with Lupoid Sclerosis in 2005 and was treated for both Lupus and MS for three years. After extensive testing and seeing several physicians it was discovered she had Lupus SLE and like so many later Fibromyalgia, Raynaund’s Syndrome, Connective Tissue Disease and Gastrointestinal Disease were added to the list.
Also struggled with hyperparathyroidism. The combination of these diseases often sends her body spiraling. Several body parts including her eyes have been impacted. Once went through a flare due to inflammation in her brain that left unable to walk for six weeks.
No one can face this type of pain and always be happy.
She encourages others to remember it’s okay to not be okay just don’t stay there! In those dark moments get you a song, book, slogan and of course much prayer to pull you through.
Yarcheka believes adding a friend to your village that has an autoimmune disorder is essential.
That allows you to speak to someone that walks a similar journey and understands your struggle. Finding a local support group has also helped her with having an outlet. She still work full-time which is not easy but, it does force her to refocus her energy.
So grateful for her support system. Yarcheka can’t give up there’s still more life to live!