Providing Answers, Support and Hope in the Southeastern US

Kristin Brittain 

I was diagnosed with lupus at a very young age. I became used to dealing with many symptoms, flares, medications, and development of related illnesses over the 20 plus years that I have been living with this disease. One of the major factors that has impacted my way of living because of lupus is the invisible nature. It was hard for people, even the medical community, to understand the battle my body was going through. Unfortunately, heart issues in women are often overlooked. With the addition of lupus, this can be detrimental. I had a heart attack on my 25th birthday. Being a young female with an invisible disease, my pain was ignored and misdiagnosed when I went to the hospital. I woke up in the middle of the night with extreme chest pain and shortness of breath. I went to the hospital the next day when I was still in intense pain. At the time of arrival to the emergency room, I was given an anti-anxiety med and told to follow up with my cardiologist. When I saw my doctor that same week, after running tests and a thorough examination, he told me that I’d had a heart attack. Being a young female, with a disease that isn’t always obvious, it is often misunderstood and overlooked—and this includes heart issues that have the potential to be fatal—that is why it is so important to self-advocate. I became used to being overlooked. This experience was a wakeup call, and a reminder to me about how important it is to speak up for myself and a big reason that I chose become an ambassador for LFA.

Chance Schwartz 

My deeply personal decade-long journey unfolded with uncertainty, characterized by a delayed Lupus diagnosis, dismissals from medical professionals, numerous misdiagnoses, and two failed cardiac surgeries. The unknown shaped my existence until a pivotal moment on my 30th birthday at Mayo Clinic, where the revelation of Lupus cast a looming shadow, accompanied by a chilling prognosis - just six months to live unless my body ceased its relentless self-attack. Remarkably, 15 years have passed since, each year etching a story of survival into the fabric of my being. Amidst months of grappling with chemo, enduring infusion hours, needle sticks, and bitter pills, my faith wavered. Hospital stays blurred into a mosaic of setbacks and triumphs. Yet, in this tumultuous journey, I've cultivated an unwavering appreciation for the simple beauty each day brings. Lupus demanded sacrifice—I had to step back from my beloved Paramedic career. This surrender meant letting go of a profession that defined my identity and infused purpose into my life. Stranded at the crossroads, I grappled with the physical toll of Lupus and the emotional weight of a stalled career and uncertain future. In an unexpected twist, solace came from the EMS community, once my anchor. Transitioning into the role of a teacher while also embracing positions as a model, professional physique athlete, and pageant queen, I declared that Lupus would not dictate the limits of my life. These endeavors weren't just personal achievements; they were a testament to resilience, refusing to let Lupus dictate my life's narrative. Living with Lupus while being a mom, wife, and navigating various roles has been an ongoing battle. Juggling demands of life while fulfilling multiple responsibilities alongside the challenges of Lupus required unwavering strength. Yet, in each role embraced, I find profound fulfillment, proving life with Lupus can be a vibrant mosaic of achievements, aspirations, and continuous growth. My journey is a living testament that Lupus does not signify an end; instead, it's a chance to inspire others to confront their struggles with unwavering courage. 

What is one piece of advice/tip you would give someone living with or caring for someone with lupus? 

The most crucial advice for someone living with or caring for someone with lupus is to be an unwavering advocate. Stay informed, conduct your own research, and don't allow medical professionals to dismiss your insights. You know your body best—your pain, struggles, limitations, and abilities. Despite lupus, don't limit yourself; refuse to let it dictate your life and rob you of experiences. This journey is a series of battles, with victories and defeats, but the key is to keep fighting. Stopping means losing everything, so embrace resilience and face each challenge with determination. 

Rob  Reinhart

"Someone said, I don't know how you do it." I said, "I wasn't given a choice." I walk for me. I am the 1-in-10. The one male of ten people diagnosed with lupus. So, of course, I have to represent, right? But I am more than that a statistic. I'm too tenacious to be a circumstance. I am a husband, dad, son, son-in-law, brother, brother-in-law, uncle, great-uncle, coworker, friend.

Many have paved the lupus path before me. Several, unfortunately, are no longer here. Others are still here. Relentlessly fighting. I have benefitted from the multitude of warriors, research clinic trial participants, advocates, and survivors with diminished quality of lives before stumbling onto the path. A path that none of us chose. I am gratefully "tethered" every four weeks by Benlysta IV that was only approved for treatment of SLE in 2010, the first in 50 years specifically for lupus. I feel compelled to carry on this collective battle and drive the momentum for better treatments and a cure to this vicious disease that steals lives.

Join Robert and others across the nation as we take steps to End Lupus Now! 

Register today!

Savanah M.

I walk because I’ve seen the debilitating effects of Lupus! I walk because I have a nine year old grandson who is beautiful and talented! I walk because my youngest daughter died as a result of complications of Lupus and neurological issues, seizures and heart failure! I walk because I don’t want to see another male or female die from something like this! I walk to make a difference and to make awareness within four communities that affect more black and brown people and it’s not given enough attention!

Will you walk with us?

Walk alongside Savanah and many others at our Walk to End Lupus Now events this fall! Register here!

Kristen Bonds

As a teenager, I saw my mother struggle with the illness herself. It took a very long time before she was finally diagnosed. Due to the disease being relatively unknown at the time, she ultimately passed away from complications due to nephritis when I was 19. I myself, was always tired and sluggish, but my doctors would shrug it off as depression or my hashimotos disease giving me problems. I was never “on the right dose” of anti-depressants or thyroid medications they would say. Fast forward to me in my early 30’s, and at that point moving around was becoming more and more of a hassle. I was told with my new pain and brain fog that I was suffering from fibromyalgia. But in my heart I knew there was more to it. Remembering back to my mothers hard work and determination to find out the cause of her issues, I insisted on getting different opinions. Finally in 2019 my bloodwork showed my rheumatologist what I knew all along. It was Lupus. It took me nearly 8 years to get properly diagnosed. But it was validation. Everyday is a new battle to be won. Sometimes I feel like a burden and I’ve isolated myself from loved ones. I’m always tired and I never feel like doing much. I lost my job in October 2020 because of covid, and with it, my insurance. So I am not being treated or on my medications at this time. I’ve just applied for disability in hopes of getting approved for the health benefits. We need to help spread more awareness and the early warning signs. We need more doctors to be proactive in determining if their patients have Lupus. And how to treat it.

What is one piece of advice/tip you would give someone living with lupus?

Take one day at a time. Listen to your body and give it what it needs. Don’t feel bad for taking an entire weekend to rest. Make sure you are saving up your energy for the important things in life. Don’t take your health too lightly. Push for new bloodwork, or new treatments. And then journal what makes you feel better or what triggers a flare up. Get support! Either join a group for Lupus Warriors or find a page on Facebook or Instagram. Follow those who have the disease as a way to reach out if you need help or have questions. Since this disease affects us all soo differently, no two cases are alike. And remember to be kind to yourself.

Alix Beaupierre

I want to inspire all with Lupus or other autoimmune disorders to take each step of every day of their lives with pride as a SURVIVOR. Many of us have full lives and responsibilities that others can see but they can't see our pain. . .can't see our exhaustion. . .can't see the swelling as we feel our joints ache or our organs rub together. . .can't feel the shortness of breath and literally hear our lungs strain to move with every breath. This may be an "invisible" condition to others but WE are visible and vocal with a goal to encourage awareness, ongoing research, compassion, and hopefully education regarding Lupus.

What is one piece of advice/tip you would give someone living with lupus?

Take time to ensure adequate rest for yourself. Self-care is a priority. Not only adequate sleep but adequate time away from stressors--the news, certain people in your life, work, and social activities that if you don't have the energy that day--stay home and rest. However don't let Lupus defeat you--eat a healthy diet, do low impact exercises such as walking or swimming. Stay active. Enrich your mind with positive inspirational thoughts daily.

Ashley Pippin-Jones 

I was diagnosed in 2012 with SLE after constantly battling infections, this weird joint pain that came out of nowhere, this beautiful rash I had developed over my cheeks and bridge of my nose. At age 25 I could barely make it through the day without feeling exhausted. After telling my concerns to my doctor over several months he finally said I think you have Lupus. I'm sending you to see a rheumatologist. After hearing this I went to my car and just cried. What the heck is Lupus?!? I googled and read about it but all I could see was " you can die from Lupus". For several months as I waited to see this new doctor, all I could think about was this was a death sentence. The rheumatology did confirm that I did have SLE. Over the years I have learned ways to cope with this disease. I'm thankful to have a great support system and have met many friends who are going through the same things.

What is one piece of advice/tip you would give someone living with lupus?

If I could give someone with lupus any advice, it would be that not all lupus patience are the same. Don't compare what's going on in your life with someone else's journey. Learn ways to listen to your body. You are your own best advocate. Rest.Rest. Rest!

Shani Brewer

I found out I had lupus around my 24th birthday in April of 2019. I was living in Denver CO at the time. Being that I am from Florida, I thought the sudden joint pain I was suffering from was just due to the cold weather. Until I went to urgent care and had blood work done after suffering for 5 months. I went in to get my results and in a room full of other patients the woman working the front desk told me I had come back positive for autoimmune disease and that they didn't know which one. I froze and asked her to repeat it and she hurriedly wrote "Autoimmune Disease" on a hot pink sticky note along with a random phone number. She told me to call the rheumatologist number and shooed me off. I didn't land an appointment with the rheumatologist until a month later. And it was then that I was told it was probably SLE. Upon moving back home to Tampa to be closer to the family- my new doctor confirmed it was SLE and MCTD (Mixed Connective Tissue Disease). My lupus mostly affects my joints, often disabling me from being able to move. I felt so betrayed by my own body- didn't it seem that I was trying to live a life of happiness? Recently I had to remember that God only gives you what you can handle. With that, I gained the determination (along with Plaquenil) to seek out comfort within the Lupus community to further understand and encourage myself and so many others. And posting my story is the first step.

Lynn Hernandez 

Hello, my name is Lynn Hernandez and I am from Miami Florida. On May 10, 2015, a visit to the emergency room is when my journey started with pain in my abdomen. After running some tests they diagnosed me with a 22-inch spleen full of blood clots. I was admitted to the hospital and four weeks later doctors had no idea how to treat me and I was transferred to a trauma center hospital and was there for another two months, little after that they performed a major surgery, then 10 hours later I had 45 Staples across my stomach. A little more then a month or so after my surgery is when I was diagnosed with lupus little did I know that was the beginning of my journey with that doctors educated me with what the symptoms were going to be. When they mention stress and sunlight as key factors to avoid my response back was I am a mother of three and the beach is practically my front yard. In the first three years of my battle, I had five surgeries and seven procedures. Little after that, I tried my best to stay away from stress and sunlight and surround myself with the right people that will lift me up through this journey. I listen to my doctors in and educated myself and involved myself with the Lupus Foundation support group. Lupus does suck and the pain is crucial. The word Warrior definitely goes hand-in-hand with this community. The battle of the mind is very strong, whenever I have a good day I decide to enjoy every minute and every second of it because we usually do not have so many of those. Just take a day at a time.

What is one piece of advice/tip you would give someone living with lupus?

Make sure that you have a good team of doctors and if you don't there's nothing wrong with changing it. Educate yourself as much as possible, the Lupus Foundation has support groups all over the United States, and take a day at a time and YOU ARE NOT ALONE

Gabrielle Davis

It was Valentine’s Day 2009, my husband and I's first Valentine’s Day as a married couple, but there was one thing missing: Me.

After putting up with the shooting pain, heart palpitations, and tin-man stiffness most of that day, I conceded and ended up in an ER hospital bed. This was the first of many encounters with lupus. I was formally diagnosed that summer in July 2009.

A year later my kidneys were affected and by 2016 I was in full kidney failure and on dialysis. I decided to become an advocate early in my diagnosis because I wanted to turn my pain into purpose and support other lupus warriors in the fight. I desperately needed community too. Advocacy has allowed me to do some great things like provide lupus education and speak New York, DC, and Atlanta and be a voice for patients. I've also been able to raise funds for the Florida Chapter of the Lupus Foundation of America and other lupus organizations.

In 2019, my life changed for the good. I thought Lupus had taken away my dream of being a mother. It hadn't. We just had to take an alternate route. On September 24, 2019, we welcome our son AJ through the gift of surrogacy. No, I spend most of my time carrying for him and still doing what lupus and patient advocacy I can in my spare time.

Lupus might have taken a lot from me, but I've got some priceless gifts, experiences, and community in return. 

What is one piece of advice/tip you would give someone living with lupus?

Somehow we all have to learn to get over the guilt that chronic illness can bring. You and I didn't ask for lupus to come into our lives and turn it upside down. I think guilt is always going to be present, but we have to be able to be still and process it to get through it. Also, remember to take care of yourself and love yourself. It sounds so simple, but it's really hard when you have a mountain of responsibilities to juggle. Make time for you and your body will thank you.