diagnosed with Systemic Lupus Erythematosus at age 13, 1983. I am now 55 years old. I attended to two different colleges for music University of South Alabama and had a full scholarship for Delta State University Music performance Major /Music therapist degree.

My lupus history… My Lupus was very active during my teenage years, so much that I had to almost drop out of high school. I was a “gifted “ student so my parents looked into enrolling me in the public school system. There I could stay home and receive a home school education. My lupus started to stabilize and I was able to go back to my catholic high school. Taking extra classes, I was able to graduate on time with my classmates. I felt very blessed to do this. I sang at our high school graduation, and I also won my high school Talent show! I felt like singing was my gift that would take me anywhere and it actually did.

Lupus has managed to attack every single organ in my body, one exception, it hasn’t attacked my liver. It’s been brutal on my heart and my lungs. age 21 it attacked my heart so badly, they had to drop 3 grams of steroids in my body iv over three days. It was brutal! 

I have noticed that my big flares where my lupus attacks my organs, every 6-8 years. These flares are bad, regardless of what I do, they still happen. It’s very discouraging, but I have learned that I have a God who is bigger than all of this, and in Him I have found comfort and peace. 

23 I moved to Los Angeles for my singing career. I was under the care of Dr Daniel Wallace, celebrity and expert rheumatologist. he kept me very healthy. I only suffered a few hospitalizations mainly because of stress and not knowing when to stop working. I was young and wanted to party and go go go. Unfortunately, you can’t drink alcohol and go like there’s no tomorrow when you have lupus.

At 31 I had to have a hip surgery, because my hip broke. All those steroids finally took a toll.
Age 35 lupus attacked both my kidneys and my heart. My heart had something called Libman-Sacks Endocarditis, and I had stage 4 class 3 lupus nephritis. I had to have open heart surgery to replace my heart valve with a mechanical heart valve, ( but when I was having a this surgery they didn’t know what was wrong with me, it was exploratory heart surgery) I didn’t have a heart valve left my cardio thoracic surgeon told me. He said divine intervention was what was keeping me alive. I was amazed that a heart surgeon was saying that. (I had a blood clot in my heart as a complication, and had my mom not been visiting me, I would have died. My rheumatologist managed to convince my cardiologist to let him start my chemo treatment for my kidneys while I was still in the hospital. After years of treatment my kidneys are back to normal 100% function, and my Nephrologist calls me his model Kidney Patient!

Today I just want to educate people about Lupus and ARDS.

Age 45 The experience that changed my life forever. I had started flaring about two years earlier, and I was on Rituximab, and all my other Lupus meds, plus my meds for fibromyalgia and Sjogren’s, and RA. when we had gone out of town to celebrate my husband’s birthday. I became so sick, I had to go back to the hotel room, and go to sleep. We went home the next day and I went to my doctor. I remember feeling very uneasy about this. I just had this feeling something wasn’t right. And it wasn’t. My condition kept deteriorating despite the antibiotics and the steroids and the shots that they gave me. I told my husband, and I never say this, “Take me to the ER!I feel like I am dying!” He’s sick too now. And he’s coughing . His parents have us in the car, they take him to his doctor while I wait, in the car, in the rain. Meanwhile, I am running a fever, and getting worse. He comes out. They said he has Pneumonia. We are finally headed to the ER. I’m immediately admitted to the hospital, I have pneumonia. That night I coded. I knew that I was dying. My lungs had filled with so much fluid I couldn’t breathe. My pulmonologist, a doctor who has known me since I was 20 years old, talked with my husband and I about putting me on a ventilator. We decided yes. I was in a coma for 5 weeks. In ICU for 16 weeks, intubated 3 different times including tracheotomy, and I was on a ventilator for almost 5 months. I had this all happen because we are susceptible to ARDS Acute Respiratory Distress Syndrome.

I am still on continuous oxygen, and I am in end stage lung disease. I have now been diagnosed with the terminal disease Pulmonary fibrosis. I have been in a wheelchair since 2016. because of my lungs,and their inability to function properly. Every day I ask God to help me help others, and help me to be more understanding, to be a better version of myself, to be a better listener and a better friend . Today I just want to educate people about lupus and ARDS how did I NOT know about ARDS, something that changed my whole life forever?

I no longer have my powerhouse voice that people who heard me sing , used to say, you sound like Whitney Houston. I used to be angry about losing my lungs, and my ability to perform, and gain an income from my voice. God gave me a different voice. I found out that I cannot have a lung transplant because I would not survive the surgery, I place all my hope and trust in the Lord, since doing so I also found out that I am in end stage lung disease, but I also found out that my lupus was in remission! So God is good! Plus, my dear husband, with his wisdom, as my advocate, with everything I taught him, saved my voice by doing a tracheotomy Ladies and Gentleman who have any illness, please teach your other half how to advocate if you cannot speak for yourself! It’s so important!!!. So I can still sing, I just can’t sing loudly or hold notes for a long time. Life is different now, but it’s beautiful, and I am very grateful! 🙏🏼💜✝️

Don’t forget to check out Lupus Warrior Princess, is a lupus awareness page that I have run since 2012, but really been devoted to since 2016. I also have an on line support group since I have become bedridden, called Live with Lupus Warrior Princess. It’s really very helpful for those of us who may be hospitalized, or who are on oxygen or worse, in terrible health situations.

She is a retired preschool teacher of sixteen years. She has been living and thriving with Systemic Lupus Erythematous for over twenty years in Little Rock, Arkansas.
A volunteer and a lupus advocate spreading lupus awareness near and far. She is a Lupus Warrior and a Lupus Champion boxing lupus 365 days a year acclaiming God as her victory being everything she needs and more!
Her first lupus symptoms began at age nine.

After being misdiagnosed for over twenty- five years and four hip surgeries later she received a diagnosis of Systemic Lupus Erythematous while being hospitalized for two weeks with chronic pain, fever of an unknown origin ,chronic urticaria and fatigue.

She stated, “Finally having an answer was welcomed after so many years of unanswered questions.”

At age twenty -nine Antoinette was diagnosed with a vascular necrosis of both hips a condition she developed from chronic steroid usage for treatment of chronic inflammation and joint pain.

She received hip surgeries at age twenty -nine bilateral core drillings to relieve the pain that she was suffering. The surgeries were not successful ,at the age of thirty she received total hip replacements in both hips . Still not having a diagnosis of lupus she continued with steroids to gain some relief from all the inflammation, joint pain and rashes. She developed hypertension and steroid induced diabetes. By the mercy and grace of God he allowed her to return to work after rehabilitation.

In 2010 she started having more problems with her hips and was forced to retire from her teaching position. In 2014she was diagnosed with metallosis a condition that she developed from the metal on metal hip implants that she had received in 2000. In January 2014 Antoinette had her fifth hip surgery and turned 45 in the hospital and once again went through rehab. Thankful that God taught her to walk again she never misses an opportunity to tell others of the Lemonade that God has made and continues to make in her life!

he medications that she received for pain after the surgery caused a new condition gastroparesis it slowed down the process of digesting food, stomach pain and not allowing food to stay down she was now losing unwanted weight!

In 2019 during a horrible lupus flare she proclaimed that people with lupus can live and thrive. It is during this time that she created the Lupus Champions Facebook group A support group dedicated to spreading and promoting lupus awareness. In this group we are encouraging help ,hope, healing, positively inspiring words, inspirational stories, resources and more !
We Are Living And Thriving With Lupus
One year …
One month …
One week…
One day ….
One hour …
One minute…
And one second at a time 💜❤️🥊❤️
In 2023 Antoinette had an occipital lobe stroke affecting her vision ,balance and her cognitively. After being hospitalized doctors discovered that she has a pea size blockage in her brain.

“I don’t know what tomorrow holds, but I do know who holds tomorrow”, she stated !

When Life Gives You Lemons Let God Make The Lemonade.
Busy 🐝

everyone

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lupus

lupuslife

4 A’s Sisters Lupus Club

4 A’s Sisters Lupus Club April 2024 Spotlights
Janay Townes, born and raised in Philadelphia, PA, and later moved to Carney’s Point, NJ, when she was fourteen. Janay was diagnosed with Systemic Lupus Erythematosus kidney nephritis stage four in 2004, and she was only fifteen years old.

Not knowing that lupus causes a lot of underlying illnesses, throughout the years, she has been diagnosed with Rheumatoid Arthritis, Avascular Necrosis, Irritable Bowel Syndrome (IBS), Asthma, Anemia, Idiopathic Thrombocytopenic Purpura (ITP), Fibromyalgia, Depression/Anxiety, High Blood Pressure, Sleep Apnea, Severe Insomnia, Raynaud’s Syndrome, and severe Migraines.

She has had numerous surgeries and procedures such as Bilateral Hip Core Decompression, Left Hip Replacement, Right Shoulder Replacement, Gallbladder removal, Appendix removal, several Colonoscopies/Endoscopies, and removal of Cancer Cells, and soon will have her Right Hip Replaced.

She has been on every lupus medication/treatment, including multiple rounds of chemotherapy, blood transfusions, platelet transfusions, plasmapheresis, losing all her teeth, and being in full menopause by age thirty.

With all that she has going on with her many illnesses, she has remained a humble lupus warrior and is still standing despite what she has been through. Janay still has good and bad days, but no matter what, she wakes up every morning ready to defeat lupus and whatever else comes her way.

Having lupus is 365 days, 24/7 job, with NO days off. Janay started LupiesUnite (Founder) so people with lupus can have a voice and be heard. Many people are still ignorant about lupus. If only they knew what people with lupus go through daily, they would understand why lupus survivors are so vocal about Lupus Awareness.

Janay may have lupus, but lupus does not have her. Lupus will not bring Janay down. No matter how many times she may fall, she will get right back up and continue to fight, spread awareness, and educate the world about lupus.” Let’s show some love for Janay!

4 A’s Sisters Lupus Club recognize our March monthly Lupus Warriors. Meet Mrs. Carol A George-Perry who was diagnosed at 16 yrs old. This was late 80s when there was very little research on lupus. She had to move to Houston to seek treatment. The diagnosis turned her active lifestyle upside down.

Carol was told she should never have kids. She was told that pregnancy could kill her. Lupus didn’t know she had a praying grandmother. She has 4 beautiful sons. They were all healthy.

At age 52, Carol have now lived with Lupus longer than she has lived without. Carol have had some really difficult times. She always push through. Carol never succumb to the pain.

Carol is fortunate to live in NC now. She receives her care at Duke Rheumatology. She has been able to get off most of her medications. Only have an infusion monthly.

Quote, “I am happily married to my best friend. I love to travel”. She’s currently a Dental Territory Manager for a Federal Dental Plan.

Help us show Carol some