Autoimmunity – Autoimmune Warrior

5-Year-Old Diagnosed with Rare Autoimmune Disease to Undergo Bone Marrow Transplant

*Paige Neale is a lively 5-year-old girl living with a rare and debilitating autoimmune disease. Image courtesy of Fox News.*

5-year-old Paige Neale of Maryland has an autoimmune disease so rare, scientists believe that there are only 100 people on the planet who have ever had it.

The disease is called lipopolysaccharide-responsive and beige-like anchor protein deficiency, or LRBA deficiency for short. The autoimmune disease causes Paige’s body to attack her joints and internal organs, like her stomach and lungs. Paige was diagnosed with the rare autoimmune disease when her parents noticed that she was getting sick a lot more often than her fellow peers her age, including suffering from swollen joints and various GI issues.

Commenting on his daughter’s diagnosis, Mike Neale said: “It’s such a tough diagnosis because you don’t know what to expect…what laid ahead for her, and what do we do next?”

According to the National Institute of Allergy and Infectious Diseases, the disease is caused by a genetic mutation in the LRBA gene. Patients with the condition are highly susceptible to infections, especially of the upper respiratory tract. LRBA deficiency can also cause various symptoms, including poor blood clotting, anemia, weakness, fatigue, joint pain, stiffness, and eye inflammation (uveitis). It can also make patients more susceptible to developing other autoimmune conditions, such as vitiligo, psoriasis, and type 1 diabetes, which cause additional symptoms as well.

For her part, Paige was also diagnosed with the autoimmune condition juvenile rheumatoid arthritis in addition to LRBA deficiency. To keep her alive, Paige receives bi-weekly shots that cost thousands of dollars, but a new procedure is giving Paige’s family hope for the future. Their little girl is to receive a bone marrow transplant in April from her 3-year-old sister, who happens to be a 100% match.

“Right now you look at her, and she looks like a completely healthy five-year-old girl,” said her father Mike. He continued, “We tend to forget how sick she was leading up to that, so we question ourselves: Should we be putting her through this bone marrow transplant that is going to destroy her immune system and make her really sick?”

If the procedure is successful, however, Paige will no longer need to get bi-weekly injections, and she’ll be able to go on to lead a normal life – an end result that her father says is the ultimate goal. Paige enjoys skiing and horseback riding – activities that have given her and her family a sense of normalcy during the COVID-19 pandemic, and throughout her vigorous treatment regimen.

To follow along with Paige’s heartwarming story, check out the Pray 4 Paige Facebook Group.

Carrie Ann Inaba Takes Leave of Absence Due to Autoimmune Diseases

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*Carrie Ann Inaba has said that she is taking a leave of absence from her TV hosting role to focus on her health.*

Carrie Ann Inaba, TV host on CBS’ The Talk and judge on ABC’s hit show Dancing with the Stars opened up about her struggle living with autoimmune diseases and chronic illnesses on her blog, Carrie Ann Conversations.

The Emmy award-nominated TV personality said that she has been diagnosed with several different autoimmune diseases and chronic conditions over the years, including Sjogren’s Syndrome, Systemic Lupus Erythematosus (SLE) and Rheumatoid Arthritis (RA), and she also has the markers for Antiphospholipid Syndrome (APS), which causes blood clots. The 53-year-old dancer and choreographer says she also struggles with fibromyalgia and spinal stenosis.

As a result of her various autoimmune conditions, Inaba has taken a leave of absence from her role on The Talk so that she can focus on her health, reports MedPage Today.

Talking about her health journey, Inaba said: “Even if we are fortunate enough to get a diagnosis, we can quickly end up with more questions than answers. Often when it comes to autoimmune conditions there is no perfect solution or clear path forward.”

Inaba continued, explaining: “Coping with autoimmune conditions can sometimes feel quite lonely. When I first got diagnosed, some encouraged me to keep my struggles to myself, but I’ve found that it’s always been better to be honest about my needs and realities than to stay silent. I believe strongly in sharing my journey, my solutions, and the things that have helped me.”

In this spirit, Inaba has shared on her blog the products that have helped her cope with her autoimmune disease symptoms – including eye dryness, mouth dryness, joint pain, fatigue, brain fog and more – so that others can benefit from these products and see if they work for them.

This isn’t the first time that Carrie Ann Inaba has opened up about her health struggles. The starlet previously posted on Instagram about how she felt ashamed of her autoimmune diseases, and wanting “…to be what people see. And people see a healthy person, from the outside.” However, confronting her health problems made Inaba reflect on who she is as a person, besides just her identity as a “sexy dancer chick.”

From all of us at Autoimmune Warrior, we want to thank Carrie Ann for opening up about her health journey as an #AutoimmuneWarrior, and raising awareness about the 80+ autoimmune diseases affecting over 23 million Americans. Because of celebrities like her, more people among the general population are learning about autoimmune conditions, and why extensive research is needed to find better treatments, and eventually, a cure.

Toni Braxton Opens Up About Battle with Lupus

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*Award-winning singer Toni Braxton, 53, has struggled with the autoimmune condition lupus for over a decade.* (Photo courtesy of Rich Fury/Getty Images)

Legendary singer and songwriter Toni Braxton sat down with publication The Grio to detail her ongoing battle with systemic lupus erythematosus, known as lupus for short. The seven-time Grammy award winner was diagnosed with the autoimmune disease in 2008, after she suffered a heart attack on stage during a live performance in Las Vegas.

“The doctors told me I could never perform again. I have systemic lupus. My lupus loves my heart. It loves my microvascular system. It loves my blood, so I get blood clots,” she explained. “The chronic pain and fatigue associated with it were overwhelming for me initially.”

The autoimmune condition affects more than 5 million people worldwide, including 1.5 million Americans. Lupus is known to affect the body’s major organs, including the heart, lungs, skin and more. Beyond the physical symptoms, however, Braxton said the disease took a toll on her mental health too.

“When I was first diagnosed, I felt that I had no one to help me,” she said. Braxton continued, “I always tried to be vocal and educate people. I remember being afraid and I don’t want anyone to feel that feeling I had.”

Though the condition initially caused her to pause her career, Braxton found relief with CBD, the compound found in medical marijuana, with helping to manage her chronic pain.

“I found that Uncle Bud’s doesn’t have THC, the stuff that makes you high. More importantly, with my body being inflamed and so on, it offers anti-inflammatory properties and for me, I need that.” She continued, “It can change your life because sometimes you just need hope. I’m so glad they finally made it legal. It’s a great thing because of the healing properties for people like myself.”

As for her advice on how to cope with having lupus, Braxton commented: “It’s not your fault. It’s nothing you did. It’s just what it is. It’s just what your body is or has become. There’s nothing you could have done to change it.”

Since her lupus symptoms have improved, she has returned to singing and has released a new album, Spell My Name in August 2020. She’s also been busy filming the reality TV series, Braxton Family Values.