Lupus Warriors Spotlights
Are you or someone you know a strong lupus warrior? In honor of Lupus Awareness Month, we want to spotlight our amazing lupus community and family for their strength all of the time. This page is for them and for you, our lupus warriors.
LUPUS WARRIOR SPOTLIGHTS
Hello, my name is Anais Pereida and I’ve been living with Lupus since December 2011. Before I was diagnosed with lupus I was always experiencing headaches. At the age of 16 I had my first seizure and was taken to the hospital. The cause was never determined and I was sent quickly home. The day I was diagnosed with Lupus I thought to myself what relief. At the time I didn’t realize how naive I was. Nearly 10 years have passed and I am still suffering from daily aches and pains. I have come to appreciate the days when I can do more.
Experiencing headaches, joint pain, swelling, hair loss and fatigue regularly has changed who I am. Luckily, I am blessed to have gone through it all with such a great support system. My friends and family see my daily struggles and continue to stand by me through it all. Surprisingly, strangers are my biggest fans! I am constantly surrounded by love. In the absence of that external love, I will never forget I still have myself. Without the love I have for myself I would have never made it this far. I advise all my lupus warriors to keep pushing daily. Whenever you feel like you are the only person by your side… I urge you to FIGHT! Never forget you are strong & you are loved 🦋
Hello! My name is Michelle Leyva and I was diagnosed with lupus sle in 2001. After battling for years I ended up on dialysis due to ESRD kidney failure caused by lupus in 2008. In 2011, I received my miracle and had a kidney transplant. This worked great for almost 9 years. Then in 2019 I was diagnosed with cancer most likely caused by being immunosuppressed. I went through chemo and radiation. Unfortunately, the treatment damaged my kidney and I ended up back on dialysis. I am currently waiting for another transplant while going to dialysis 3 days a week. Lupus has definitely affected mine and my family’s life but I won’t let it define me. I will continue to fight and believe in miracles. Especially the belief that they will find a cure for this awful disease.
DINA & ASHLEY
“I wanted to nominate myself and my friend Dina. We’ve been friends for years on Instagram, but neither of us ever talked to each other about our heath struggles. Then, just before Christmas I was diagnosed with Lupus SLE, I started talking about it on social media and she told me she had Lupus too. Our bond has grown from there and I’m so thankful for her. She got diagnosed at 19 (4 years ago) and is now starting to lose vision in one of her eyes and was just put on chemo. It would be really cool to see her on your page! She deserves a little pick me up during this hard time.”
– Ashley Bird (@makeupbyabird)
“Carly Boyd is an everyday hero. From the outside, you would never be able to tell that she suffers agonizing pain from lupus daily. She is a full-time student finishing her Master’s degree, an incredibly hard worker, full-time cat & tortoise mom, and all the while planning her own wedding amidst a worldwide pandemic. Nothing can bring this woman down. Her joy and positive outlook on life are contagious to all those around her. She is the definition of true strength, pure beauty, and anyone with who gets the privilege of knowing her will be forever better because of it.”
– Jessica Hallahan
“I met Mercedes because I am friends with her sister-in-law. I was asked to help her when she was newly diagnosed so she could have some Direction and support. She’s truly one of the nicest people I know on this planet. Not only is she a Flamenco dancer and Flamenco teacher, but she is also an Interfaith minister. She pursues both passions despite her illness. I find her inspiring because she is such a dear and sweet person. She remains positive even in the face of adversity. I love that she still wants to teach Flamenco to kids despite her physical challenges.”
– Alexis Markowitz
“You won’t find a fiercer Lupus warrior than Janet. Her goal is to win and help others. She not only gives her all to the cause but goes above and beyond to help others achieve their goals. “I love what I do for the Lupus Foundation, it’s fun because of the people I meet, exciting because of the new advances in the treatment of Lupus and fulfilling when I see the smiles on the people who attend the support groups, events, the volunteers or just see them around town. One day we will win the fight against Lupus, if you don’t see me standing next to you it’s because I will be leading the charge.”
– Al Silva
“My lupus warrior is my 17-year-old, Kierra. Diagnosed at the age of 7, her childhood was a bit different than her friends. Blood draws every two months faithfully and 2 kidney biopsies. She’s determined to not let this disease define who she is. She continued to work hard through school and is graduating this year. She continued to do her favorite, which is play soccer. Lupus was not going to stand in her way. She turns 18 Monday and as I look back over these last 10 years of having this disease, we’re pretty blessed. Her Rheumatologist is fantastic and has always taken good care if Kierra. She’s our warrior, and we continue to pray for a cure for our girl. It hasn’t been easy for her, but overall, she’s doing amazing!!”
– Dorinda Thornton
“Darby is one of the strongest, most inspiring people I know. While lupus has limited her in some ways, she always perseveres. During Darby’s undergraduate studies, she was hospitalized and had to take some time off, however, she did not let that stop her from finishing her degree with her friends and graduating with honors. Now she is inspiring others, not only with her story but also through her dedication to lupus awareness and the Lupus Foundation of Southern California. Darby is a superstar”
– Emily Reeves
“Here are two stories for my spotlight. The first one is with my parents Spring 1982 when I was diagnosed with lupus at my SDSU Graduation Celebration and then 35 years later at the Lupus Walk at Shelter Island. My parents, Tomas & Concha, were there in the beginning and 35 years later, they were still behind me at the lupus walk at Shelter Island. When I felt I couldn’t go on, their encouraging words helped me to go on to accomplish my many life goals. This summer will be 38 years since I started my lupus journey.
I was first diagnosed with lupus in 1982. My family was behind to meet my health challenge each day. But when you have someone behind you telling you that you can do it, it makes it a “Little Easier”. It hasn’t been an easy road but I’m proud of the steps I’ve taken so that I can help others newly diagnosed about how they too can accomplish their dreams.
I’ve attached a 3rd picture of my family at my 60th Birthday Party in 2018. As many will say, It’s your family you rely on when you’re faced with life’s challenges. Each member lends a hand at different times of your life. But when you put it all together, you come out a stronger person. Lupus and all!”
– Gerardo Becerra
My name is Stephanie, I was diagnosed with lupus a year after I suffered a stroke at 36! I have three children and have been married to my college sweetheart for 21 years. I was hard to diagnose and saw over 13 doctors and specialists before getting a diagnosis, everyone kept telling me, “You don’t look sick!” I help control my lupus with diet (Autoimmune Paleo diet), exercise (running), and medication. My favorite song is “Fight On Fighter,” by For King and Country, and always makes my day better. I also have Celiac disease and Hashimoto’s. I love being outside and hiking and running. I’m always found wearing a hat! When bad days come, I reach out to my fellow Warriors for strength (support groups), pray, and try to get moving! I have lupus, but lupus doesn’t have me! Stay positive my fellow Warriors!! Someday we will have a cure!!
“Mr. Langley, you have Lupus,” are words I will never forget. After two years of being extremely weak, no energy, chronic fatigue, loss of appetite with extreme weight loss, chest pains (feeling like I’m having a heart attack); they finally figured it out. It took severe pain, an ER visit which turned into a two-week hospital stay and a plethora of tests for the doctors to come in and explain I have Lupus. The year 2010 truly changed my entire life. I didn’t know what to think as the only information I was told was that Lupus is a disease only females have. Now I’m questioning myself, my masculinity, my life span as I was just given a death sentence. “How could I even get a female’s disease?” I definitely didn’t want to tell anyone as I was embarrassed and didn’t know much about it myself. I kept it to myself for 3 years because I was afraid of the judgment and public misperception that I am a weak male because I was diagnosed with a female’s disease.
When I finally got to the place I could share my life and story, the outpouring of love and support was phenomenal. The more I shared, the more I realized so many other males felt the same way I felt and they too were afraid of the judgment of owning this disease. At that moment, I found my purpose. If so many males are uneasy about speaking up, I will speak up for them.
I now use my platform as a professional drummer to spread awareness and advocate for myself and other males living with Lupus. I founded #BeatLupus LLC and created apparel that I wear everywhere. I am questioned often about my t-shirts, as many assume I am wearing the shirt in support of a female and I use every opportunity to educate those persons that men have Lupus as well! Men have the same struggles as females living with Lupus and statistically have more Lupus activity due to misdiagnosis or even medications truly not being strong enough for our bodies.
It is my true desire not only to spread awareness by using my voice as a male living with Lupus but to also empower ALL Lupus Warriors that they too can #BeatLupus!
EMMITT HENDERSON III
My name is Emmitt Henderson III, My Lupus Journey started in 1980 at the age of 10yrs old when I developed a skin rash that covered the left side of my upper body that caused a lot of irritation, scarring. Itching and fevers. The doctors concluded the diagnosis as a “Rash of unknown origin” It was not till I was diagnosed In 1995 with Systemic Lupus, that the diagnosis back then was Discoid Lupus of the skin.
At the age of 25, I felt I was successful with 2 kids, a brand new condo, and a car I purchased on my own and making good money for my age. Life was good, until major joint pains and overall body pains caused me to go into the hospital. After being in urgent care for over 8hrs, I was ambulanced to the hospital and after almost 3 weeks I was diagnosed with Systemic Lupus erythematosus.
Every organ and system in my body was affected from my Kidneys, Lungs, Heart, Gall Bladder, Liver, and Brain. Also, Lupus has affected my circulatory, respiratory, digestive, and nervous systems as well. My most notable procedures were a clinical trial bone marrow stem cell transplant, a kidney transplant, right knee replacement, left knee replacement, and my gall bladder was removed. I had a port a cath installed in my arm for blood transfusions, I went through chemotherapy and radiation therapy, I had a peritoneal tube installed for dialysis twice because of an error, I had Cardiomyopathy which led to heart failure, during that time I was put in a medically induced coma to avoid a heart attack. After 3 weeks in the coma, I had to go to rehab to learn to walk, talk, and use all my limbs again. I suffered from Interstitial Lung Disease, which caused 20% of my lungs to fail. I developed ulcers in my throat and had to eat from a feeding tube for over a week. I had major cases of arthritis, gout, and shingles, all this due to Lupus.
Today, I advocate for Lupus Awareness and Mental Health. I push the effort for men with an autoimmune disease to speak on it and help others that need it. As a man with Lupus, we tend to hide a lot of our symptoms and display that “macho man” mentality that we are invincible in our own way. I’m showing that we can be invincible in our own way and speak on any ailments we are going through to show that we are still Strong. Our stories can inspire others to overcome their illness and live a happy life. I created my business and brand called Male Lupus Warriors, to stand out as a man living with Lupus. In a short time, Male Lupus Warriors has had a lot of recognition in ways of being highlighted in magazine articles, speaking events to college students on Lupus and Mental health, speaking events with the Lupus Foundation of SoCal, Live news appearances promoting Male Lupus Warriors, a guest on radio talk shows, live interviews on health platforms and numerous social media exposure on Lupus related topics. I’m also an Honoree for an advocacy award from a Lupus Foundation in Georgia.
In addition to advocacy, I am Vice President of a nonprofit organization called Hugs and Bags. We help the community with essentials like food, clothing, toiletries, and haircuts. Since Covid-19, we continue to feed seniors, residents at low-income housing, and essential workers over 600 meals a day, 4 times a week. Between the two organizations, I stay busy and continue to fight my ailments with Lupus.
I want to encourage people that no one has to be a victim to their illness, that with good support, medication, diet, medical attention, and self-care, any disease can be manageable. Despite this disease, I Live every day to accomplish my goal of being the best person I can be, to uplift those that are hindered because of this illness and to be the Best example of Life Living with Lupus?
This is my daughter Janalynn Abaya. She was diagnosed with Lupus at 11 years old but was showing symptoms at a very early age. It took about 2 years to diagnose her. My daughter is healthy and strong 21 years old now and through the help of all her specialists from pediatrics to adulthood has found the right medication regimen to control her lupus with flares that come and go. She has gone through a lot of different challenges and symptoms throughout the years but has fought through it all and continues to learn more about herself and her body. She is now a student at UCLA and studying pre-med in hopes to one day help others as they helped her! As parents, we are so proud of her accomplishments and will always be our shining star!
DID WE MISS SOMEONE?
If there is someone you’d like to spotlight here, please email us with a photo and a short description as to why you’d like to spotlight someone (or yourself) and we’d be happy to add it to the album.
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