Professional Soccer Player Describes Life with Autoimmune Diseases

Shannon Boxx, a professional women’s soccer player, secretly battled two autoimmune diseases while winning medals across the globe

Playing Professionally with Invisible Illnesses

In 2012, Shannon Boxx, a professional soccer player on the US national women’s team, was at the top of her career. She had earned medals at three World Cup games and two Olympic gold medals. However, unbeknownst to her teammates and coaches, she had actually been diagnosed with a debilitating autoimmune disease a decade prior, and another autoimmune disease just four years ago.

Boxx, now 42, was first diagnosed with Sjogren’s Syndrome in 2002, which causes widespread dryness, joint pain and fatigue, among other symptoms. She was later diagnosed in 2008 with systemic lupus erythematosus (SLE), or simply, lupus, which also causes a myriad of symptoms, including joint pain, muscle pain, fatigue, skin rashes, brain fog and major organ involvement.

Treatment for Lupus and Sjogren’s Symptoms

When interviewed by the publication The Undefeated, Boxx said that she manages her lupus flares by wearing compression pants, which help with the joint pain that she experiences in her knees. She also takes hydroxychloroquine, also known as Plaquenil, an anti-malarial drug that helps her to manage the joint pain associated with both of her autoimmune conditions. Boxx describes her joint pain as severe; “There were times, even when I was playing on the national team, I was having teammates cut my steak for me because it hurt so much on my wrist to actually hold onto a fork or a knife.”

Fatigue and brain fog are other symptoms that Boxx battles daily. “I used to be able to run forever, and now I can barely walk sometimes for a mile or two. And that’s pretty heartbreaking,” she confessed. Boxx has children, and she wants to be able to run around with her kids for as long as possible. “To know that there’s days that I can’t do it, it puts you in a really bad place, mentally,” she said. When asked about how the fatigue feels, she commented, “It is this feeling of a weight just sitting on you and just even to lift your head off the pillow takes so much effort and your eyes don’t want to open. When I was playing it felt like my feet were in quicksand.”

Autoimmune Disease Triggers

Boxx explained that one of the main triggers for her autoimmune flares is stress. Now that the coronavirus is grappling the world, the global pandemic has added another layer of anxiety to the mix, especially given that she is immunocompromised. As a result, the professional athlete is following local shelter-in-place orders, wearing masks diligently and ensuring to frequently wash her hands and stay six feet apart from others.

Another source of anxiety is the fact that hydroxychloroquine, the medication that she takes, has become more scarce as a result of it being explored for its potential use in treating COVID-19. “It makes me sad that there are a lot of people that are suffering or even worse because they now can’t get the medication that they need,” she said.

Boxx believes another potential source of her flares is over-exposure to the sun, though thankfully, most days are overcast in her home of Portland, Oregon in the Pacific Northwest. She also frequently experiences the so-called ‘butterfly rash‘ that is a hallmark of lupus, and can arise following exposure to sunlight.

Two other factors that must be considered in the pathogenesis of autoimmune disease are sex and race. According to the Sjogren’s Foundation, nine out of 10 Sjogren’s patients are women; similarly, the US National Library of Medicine states that nine out of 10 lupus patients are women. Lupus is also three times more likely to occur in African American women than white women. Boxx, for her part, is a biracial woman, so her gender and ethnic background may have played a part in developing autoimmune diseases.

Moving Forward with Chronic Illness

Shannon Boxx plays in a friendly soccer match against Brazil’s women’s team.

Though living with two different autoimmune conditions is undeniably challenging, Shannon Boxx is determined to live her best life. She retired from playing professional soccer in 2015, and is focusing on taking care of her own health, and spending time with her husband and kids. Though she has retired from professional soccer, she enjoys playing non-competitive games with other international teams and coaching kids’ soccer teams.

Boxx is also an advocate for those living with chronic illnesses, and actively participates in awareness campaigns for the Lupus Foundation of America. Commenting on her conditions, she said, “I’ve been able to deal with it, and still do something that I love…[lupus] has shown me that I can’t take [soccer] for granted, because that’s something that I love to do. If anything it’s given me perspective.”

10-Year-Old Battling Autoimmune Disease Becomes Special Deputy

Caleb Anderson, Special Deputy for Boone County, is battling an autoimmune disease

Caleb Anderson, a 10-year-old boy from the Indianapolis, Indiana area, has become the newest member of the Boone County Sheriff’s Office.

Caleb, who is battling an autoimmune disease, wants to be a K-9 handler when he grows up. As such, the Boone County Sheriff’s Office wanted to surprise Caleb by swearing him in and deputizing him as a Special Deputy. At the swearing in ceremony, Caleb got to meet K-9 Deputies Clint Stewart and Taylor Nielsen, along with their trusted K-9 partners, Makya and Arco. Nelson Uniforms also donated a full uniform and tactical boots for Caleb to wear.

Caleb Anderson meets K-9 handlers and their K-9 partners at the Boone County Sheriff’s Office

Sheriff Nielsen commented, “Caleb’s theme is ‘Fight Courageously’, we can all learn from this.” He continued, “We have learned from Caleb that when we are faced with difficulties in life that we fight with everything we have. Keep fighting Deputy Caleb, we will always be in your corner.”

Sue Anderson, Caleb’s mother, said that Caleb currently attends Connections Academy, an online school. She explained, “Since Caleb is immune suppressed he can’t go into a classroom setting due to the risk of infection for him.”

Anderson explained that she was connected with the Sheriff’s Department when Caleb had the opportunity to meet up with Deputy Nielsen to do K9 training, and from there, was introduced to all of the amazing people at the Boone County Sheriff’s Office. “Caleb dreams about being a K9 handler one day and is a little shadow to the Sheriff and Deputy Nielsen,” she said.

The Autoimmune Warrior team is so happy to see that Caleb is realizing his dreams of becoming a K9 handler! Battling an autoimmune disease is never easy, and especially challenging as a child. Thank you, Caleb, for being an inspiration to us all.

To watch Caleb’s swearing in ceremony, check out the video on Boone County Sheriff’s Office Facebook page.

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Autoimmune Patient Becomes First Double-Lung Transplant Recipient after Surviving COVID-19

Mayra Ramirez is the first known patient in the US to receive a double lung transplant after surviving COVID-19

Mayra Ramirez, a 28-year-old paralegal, had always been relatively healthy, enjoying going for runs around her Chicago neighborhood. She had neuromyelitis optica (NMO), an autoimmune disease that affects the spinal cord and nerves of the eyes. Other than this diagnosis, however, she was in good health and took extra precautions when COVID-19 hit Illinois.

Mayra Ramirez, a 28-year-old paralegal and autoimmune patient, contracted COVID-19 despite taking precautions

In March, she began working from home and rarely left home. But in April, Ramirez says she began to experience symptoms of fatigue, chronic spasms, diarrhea, and loss of taste and smell, in addition to a slight fever. So she contacted her doctor, who recommended that she monitor her symptoms from home, and keep in touch with a COVID-19 hotline.

Unfortunately, in late April, Ramirez started to feel “really bad” and ended up going to the ER at Northwestern Memorial Hospital where she was put on a ventilator. From that moment on, she says “everything was a blur”.

Ramirez spent the next six weeks in the COVID ICU, on both a ventilator and ECMO, a technique of providing prolonged cardiac and respiratory support to patients whose heart and lungs cannot support themselves. By early June, her lungs showed irreversible damage and the hospital’s medical team said that it was clear that only a double-lung transplant could save her.

Mayra Ramirez’s lungs suffered irreversible damage from COVID-19 (pictured here is one of her lungs)

“Once Mayra’s body cleared the virus, it became obvious that the lung damage wasn’t going to heal, and we needed to list her for a lung transplant,” said Beth Malsin, MD, a Pulmonary and Critical Care Specialist with the hospital.

So on June 5th, Ramirez underwent the life-saving double lunch transplant procedure, making her the first known patient in the US to receive such a transplant after surviving COVID-19. She was discharged from the hospital on July 8th, but has continued to receive occupational and physical therapy after the procedure.

Mayra Ramirez received a double-lung transplant after experiencing severe lung damage due to COVID-19

Ankit Bharat, MD, Surgical Director of the Northwestern Medicine Lung Transplant Program, stated “When we opened Mayra’s chest cavity, large parts of her lungs were necrotic and filled with infection. The severe damage and inflammation to the lungs had caused pressure overload on the heart which further made the surgery quite complex…Nevertheless, the success of [the transplant] emphasizes that surgical innovation can also play an important role in helping some critically ill COVID-19 patients.”

Mayra Ramirez stands alongside Dr. Bharat and Dr. Tomic, two of the medical professionals from Northwestern Medicine who aided her in the fight against COVID-19

When asked about her experience with COVID-19, and what she would want others to know about the disease, Ramirez says, “People need to understand that COVID-19 is real. What happened to me can happen to you. So please, wear a mask and wash your hands. If not for you, then do it for others.”

To learn more about Mayra’s story and her experience as an autoimmune patient with coronavirus, please visit the Northwestern Medicine website.

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