Lupus Awareness Month | Philadelphia Tri-State
This May, celebrate Lupus Awareness Month! Did you know that 73% of Americans, ages 18-34, those most at risk for the disease, have never heard of lupus or know little or nothing about lupus beyond the name? We need more people to understand the importance of lupus and will be conducting activities this month to spread awareness and raise funds for much-needed research.
THANK YOU to everyone who honored Lupus Awareness Month this year!
Check out our Facebook album to see photos from May.
Lupus Awareness Month is a globally observed month celebrating the many advancements in lupus research, while acknowledging that we must still fight every day for a cure.
Public awareness of lupus remains low. Nearly two-thirds of the public knows little or nothing about the disease beyond the name. We need your help to change that. Join the growing number of communities that go purple in May!
On #GivingTuesdayNow, we smashed our goal of $6,000! The final total of the day, including a generous $12,000 donor match, was $23,230! Thank YOU for being part of this incredible community.
This global day of observance is observed annually on May 10 to recognize the 5 million people across the world living with lupus.
Thanks for putting on purple on May 15! Watch for a photo album on our Facebook page to see how our region went purple this year!
From May 15-31, make a donation of $25 or more to your own personal Walk to End Lupus Now or Lupus Loop fundraising page and we would be pleased to send you a Lupus Foundation of America face mask to help keep you safe during social distancing.Donate to your page
Thanks for joining us for Core and More to close out Lupus Awareness Month! Special thanks to instructor Joy Lagrimas, for leading us in this free workout!
July 1st, 2020 will mark 10 years to the day that Julie West was diagnosed with lupus.
Like many people, Julie remembers everything from that day. She was on vacation, in a CVS parking lot, when she got the call from her doctor that changed her life: Julie was diagnosed with lupus.
“I was scared to death," she recalls. "I couldn’t believe it."
Julie started feeling symptoms during a yoga class, and went to many doctors for help. As lupus primarily affects her bones and joints, and Julie also lives with fibromyalgia, she ended up going to a sports medicine doctor, who finally ordered blood work for her. Shortly after, she was diagnosed with lupus.
It was then that Julie started to connect the dots. From migraines starting in childhood, to developing Raynaud’s in her 20s, experiencing miscarriages in her 30s, to then confronting terrible fatigue in her 40s, a diagnosis of SLE started to make more sense.
Julie immediately turned to the Lupus Foundation for guidance, as she knew very little about lupus. She read countless articles and connected with others with lupus. The LFA website provided her with invaluable resources, and she was grateful to the staff at the LFA for making her feel safe and comfortable.
Since July 1st, 2010, Julie has sprung into action. She has served on our Board of Directors, attended support groups, raised over $50,000 for the Chapter, and is on the microphone at the Walk to End Lupus Now Delaware as emcee!
She credits her attitude of gratitude with lifting her spirits throughout the past decade: “I’ve grieved so much due to lupus: my marriage, my career, my health, my home and being able to do the things I love. At the same time, people have been so loving, caring, and giving and shown me the best of people. Even though lupus took so much away from me, I received so much more."
RexAnne Roundtree spends much of her time pouring candles. Having officially launched her candle business GiGi Flame in July of 2019, RexAnne’s days are filled with melted wax and various aromas of juniper, rose blossom, vanilla, and more, all sourced from local vendors. Her love of creating candles began over 18 years ago when she learned the craft of candle pouring and it has now morphed into her personal call to action.
A proud supporter of the lupus community, RexAnne’s mother, Joan passed away in 2017 after battling lupus for 39 years. As a teenager, RexAnne remembers taking care of her mother during flares, missing school extensively, and signing on as her mother’s power of attorney in high school.
Joan brimmed with positive energy despite her illness. RexAnne and Joan were extremely close. "We both loved my furbaby doggy daughter Girlfriend—my mom’s grandpuppy." At one point, RexAnne recalls, her stepfather said that Joan would not have lived as long without RexAnne’s constant devotion. Given that Joan was given 15 years to live upon being diagnosed in the 1970s, she always relied on her signature sense of humor, making her years in and out of the hospital less difficult.
Unfortunately, both Joan and Girlfriend passed away within months of each other (Girlfriend battled canine cancer for 3 full years and at one point was in remission for 5 years). RexAnne uses her candle pouring as an outlet for their legacies: 20% of all proceeds from GiGi Flame’s online shop are split between the Philadelphia Tri-State Chapter and the National Canine Cancer Foundation. Today, on Mother’s Day and World Lupus Day, RexAnne will recognize her dear mother’s memory in the form of a donation to our Chapter, so that we may continue our work of funding lupus research and providing community.
On starting GiGi Flame, RexAnne says: "Since candle pouring was such an amazing and fulfilling hobby providing comfort away from the pain, I felt the need to provide purpose and beautiful fragrances to not only my life but also family, friends, and now to the public. I’ve managed to create a way to help many come home to homes smelling lovely at any time of year all the while providing two separate charities support."
As Joan’s caregiver, RexAnne understands that caregivers need to care for their own well-being. Her drive for wellness and sanctity in the form of candle pouring allows her to grieve for her loved ones and tap into her own productive outlet. The ‘Miss Joan’ candle debuted last November—floral, woodsy, and purple. Check out the Miss Joan candle HERE!
Rosybell Maria speaks beyond her years. At 26, she works full time in higher education, studies part time at the University of Pennsylvania for dual masters degrees, and lives with the challenges of lupus every day. But Rosybell insists that lupus is the reason she is thriving today.
"Sometimes your world comes crashing down, but there’s always a silver lining. That has been critical for me in dealing with lupus," she says, recounting her diagnosis. She has always been an advocate for herself, growing up watching her mom live with the disease as well.
However, once Rosybell was diagnosed, she did not see it as shameful, even though she had her fair share of disappointments. In college, she worked towards her dream of becoming a diplomat by learning various languages and studying abroad. Upon receiving her diagnosis, Rosybell quickly came to terms with the fact that she would have to be dependent on U.S. medicine and could no longer pursue her dream career of becoming a diplomat.
But Rosybell was at a point in her life where she had to reflect on how she could harness her diagnosis for the better. With a supportive family and rheumatologist, Rosybell shifted gears and has redirected her passion into fighting for change in her local community of Philadelphia, championing equitable access to education for minority women. Her passion for this makes juggling everything easier, along with proper planning and knowing her boundaries.
She shares: "Too often, we unconsciously place roadblocks in our paths. These blocks manifest into our mindset about our abilities, our concerns about how we are perceived, our thoughts on how worthy we feel, our fear of failure and or our fear of speaking our truths. And too little we acknowledge that the healing process is by no means linear. It messy and unpredictable."
Though Rosybell grew up watching her mom live with lupus, it wasn’t until she received her diagnosis 5 years ago that she truly knew what Lupus Awareness Month meant to her. This year, she plans to go purple (Put on Purple day is today!), host a Facebook fundraiser, and work with her college sorority on a social media campaign for lupus awareness.
“I don’t think that a lot of people know what lupus is- but they know it’s not a good thing.”
When asked what Lupus Awareness Month means to Gina Leusner, she recalls a lot from the past 7 years of living with lupus.
“When I was going through the diagnostic process, what was most frustrating was how long it took to get diagnosed.” Gina went back and forth to different doctors for years. She was told she should instead consult a psychiatrist because her symptoms were all in her head. People hinted that she was a hypochondriac.
Doctors would tell her nothing was wrong, so she’d give up. But then, months later, when her symptoms would creep up on her and she wouldn’t be able to get out of bed for days, and her pain was so bad she could feel every single joint in her toes, she would go to the doctor. And the cycle would repeat.
But in 2012, she went to her family doctor, who had a resident sitting in on her appointment. Gina was in tears while catching the resident up, who ended up asking Gina if she ever saw a rheumatologist.
Once she finally met with the rheumatologist, everything started making sense. Gina was officially diagnosed with lupus in January 2013.
In sharing lupus facts on her social media, taking part in the South Jersey walk since 2013, hosting her annual bowling fundraiser, and developing a strong support network, Gina shares what motivates her to stay involved: “What drives me is that I wouldn’t want anyone else to go through what I did. Once I was diagnosed with lupus, I realized this can happen to anyone. You really have to know what to look for.”
Gina’s family was extremely supportive of her involvement with our Chapter. She laughs recalling her mom’s strong interest in learning as much about lupus as possible: “She probably had the LFA office on speed dial.”
This period of time became strangely reminiscent years later when in 2017, Gina’s son Nick started experiencing back pain as a high school senior. When the pain wouldn’t go away and rashes started appearing, Gina knew she had to push further to get Nick the best care possible to figure out the source of his pain.
Two years later, in 2019, Nick received his lupus diagnosis.
But seeing his mom live with lupus gave Nick hope despite his diagnosis. Today, the Leusner family continues to support our Chapter and raise awareness of lupus year after year.
"It was June 1996; I was experiencing some issues with pain in my side. My mom thought it was due to the cyst that was on my ovaries. The pain became more excruciating, so my mom had to take me to the hospital. I went to the ER and was admitted so further testing could be done to determine what was going on. While in the hospital, I woke up one morning to a field of doctors surrounding my bed. I was wondering what was going on. One of the doctors who became my lupus doctor stated that my white cell count and ANA totals revealed that I had an autoimmune disease call Lupus.
I never heard of Lupus and did not know what it was and what it meant and I became depressed. How was this disease going to affect me? Was I going to die? Why was this happening to me? During this time, I was working torwards my undergraduate education in North Carolina. For the next 4 years, I tried to manage school and living with Lupus. College life was sometimes challenging because of my illness. There were days that the Dean of the School would see me trying to make it to my classes. She would look at my face and tell me to go back to my room. She knew that I was determined to make it through in spite of the pain. I would keep pushing myself until this disease would put me flat on the back and handicap me for a couple of days.
Lupus has affected my body especially when I was pregnant with my one and only child, where I had to go on bed rest. My doctor told me that I would not be able to carry the baby because my Lupus numbers were increasing day by day. During labor the doctor told my husband that a decision had to be made if he wanted me to go through a C-Section because he was getting ready to lose both of us.
After living with this illness for several years, I was then diagnosed with a few more autoimmune diseases that would, in turn, fight against each other. I now have Rheumatoid Arthritis, Fibromyalgia and Sjogren's Disease. My doctor started calling me the "Triple Threat". I know have Spasmic Dyphomia in my vocal cords which know makes my voice hoarse. As I live with this disease on a daily basis, I don't move as fast as I used to; It takes a lot for me to do physical activities; It takes me more than a minute to go up a flight of stairs; my joints hurt; I have insomnia most times; I sometimes get depressed, and now I experience the thing called "Lupus Fog"... I still strive each day to fight through this illness. I do not and dare anyone else to define what I can and can not do because I have Lupus. I am a Lupus warrior who fights every day to maintain a normal life as a daughter, grand-daughter, wife, mother and friend. I make it my mission to educate people about this incurable mystery disease. As my team name states: 'I am not Fast but Furious.'"
Whether you live in Lancaster or Langhorne, Dover or Deptford, or anywhere else in the tri-state region, get your town to spread lupus awareness! How can YOU paint your beloved town purple? Email [email protected] to get started! And be sure to follow our social media @LupusTriState to see the landmarks we're turning purple this May!
Each May, we work with local lawmakers to officially recognize Lupus Awareness Month in Pennsylvania, New Jersey, and Delaware. If you're interested in joining us at a State Capitol visit, reach out to Maggie at [email protected]
Lupus has the power to inflict physical, emotional, and financial strain- all the more reason to end its devastating impact. Educate yourself about this disease this Lupus Awareness Month, and share what you learn with others.
On average, people with lupus take eight prescription medications to manage all of their medical conditions, including lupus. Sometimes, side effects from medications like steroids can cause long-term damage, so researchers are looking to provide alternative medications.
Between 15 and 60 percent of people with a chronic illness will experience clinical depression. Caring for both the body and mind is crucial for people living with lupus.
A person living with lupus incurs an average medical and loss of productivity cost of roughly $20,000 per year. This can increase to $63,000 per year if he or she has kidney complications.
A donation in honor of Lupus Awareness Month shows us that you hear voices of lupus champions everywhere and seek to amplify them. The money we raise goes towards programs and services, like self-help courses and advocacy days, as well as research initiatives at the local and national level.Make a gift today