Toni Braxton Opens Up About Battle with Lupus

Award-winning singer Toni Braxton, 53, has struggled with the autoimmune condition lupus for over a decade.
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.


    

My #ThisIsSjogrens Awareness Campaign Submission

Did you know that April is Sjogren’s Awareness Month? That’s right, according to the Sjogren’s Foundation, April was declared Sjogren’s Awareness Month in 1988 when New York Congresswoman Louise Slaughter read it into the Congressional Record.

The 2021 theme for this awareness campaign is Coming Together to Conquer Sjogren’s. When you post on social media or other digital platforms about Sjogren’s, use the hashtag #ThisIsSjogrens to highlight your personal experience as part of the campaign. The purpose of the campaign is to raise awareness about the complexities of the disease, and provide a voice to the 3 million+ Americans (and many more worldwide) who live with it every day.

As April is fast approaching, I wanted to share my personal #ThisIsSjogrens submission with the Autoimmune Warrior blog followers. Read my submission, below!



Name: Isabel

Current age: 28 

Age when diagnosed: 20

Please finish with the following sentence: “Since I was diagnosed with Sjögren’s, I have learned…”
Since I was diagnosed with Sjogren’s, I have learned how important self-care is. Although you can’t let the disease rule your life, you must also learn to listen to your body and take the needed time to rest and recharge.

What are your 3 most difficult symptoms?
My three most difficult symptoms are eye dryness, mouth dryness and joint pain, although I also experience fatigue, brain fog and peripheral neuropathy. 

What are ways that you cope with your most difficult symptoms?
For eye dryness, I use artificial tears eye drops several times a day, and I also take prescription eye drops to reduce inflammation in my tear glands. I also had punctal plugs inserted in my tear ducts to increase my tear retention. For mouth dryness, I use artificial saliva and take pilocarpine, a medication that stimulates saliva production, and I drink plenty of water throughout the day. For joint pain, I take a prescription medication that reduces inflammation and pain in my joints. 

What is one of the ways that you’ve been able to effectively cope with symptoms during this past year in the pandemic?
During the past year of the pandemic, I have taken more time to rest which is helping to reduce my fatigue levels. Also, since I now work from home, I’m able to use a humidifier to humidify my home office environment, which helps with my dryness symptoms.

What is the best tip you would share with another Sjögren’s patient?
If I had to give a tip to another Sjogren’s patient, I would say to find a team of medical professionals who are familiar with the disease. Many medical professionals think that Sjogren’s is just dry eyes and dry mouth, and don’t realize that there is a lot more to the condition and the other symptoms it can cause.

How does the Sjögren’s community and the Foundation give you strength?
The Sjogren’s community and Foundation help to connect me with others who have the disease, so I can build a community around me of other patients who understand what I’m going through. 

What do you wish people understood about Sjögren’s and how it affects you?
I wish people understood how much having a chronic illness like Sjogren’s impacts my health and day-to-day wellbeing. I might not be able to do things that I once could due to this disease, but I won’t let that stop me from achieving my personal and professional goals.


To participate in the #ThisIsSjogrens campaign, answer the questions in the Sjogren’s Foundation questionnaire and email your answers to etrocchio@sjogrens.org.

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Baby with Rare Autoimmune Disease Seeks Stem Cell Donor

Boston De Castro smiles while in care of the Children's Hosptial
Boston De Castro has a rare autoimmune blood disease called HLH, and he desperately needs a matching stem cell donor to save his life.

A three-month old baby boy named Boston De Castro from Winnipeg, Manitoba, Canada is seeking a stem cell donor.

Boston suffers from a rare autoimmune disease called hemophagocytic lymphohistiocytosis, known as HLH for short. According to Cincinnati Children’s Hospital, HLH is a life-threatening autoimmune condition in which the immune system’s T and NK cells become overactive, causing damaging inflammation to the body’s tissues and internal organs. The condition is especially damaging to the liver, brain and bone marrow, where blood is made.

Symptoms of HLH include persistent fevers, rash, enlarged liver and spleen, anemia, low platelets and white blood cells, jaundice, hepatitis, liver failure, respiratory issues, seizures, and altered mental functions. Patients need to undergo blood transfusions, stem cell therapy and a bone marrow transplant, in addition to taking various medications to calm the immune system, including steroids and chemotherapy.

Boston first started experiencing symptoms only a few weeks ago, when he developed a fever, and then his liver and spleen became enlarged. Shortly after, his blood counts started dropping rapidly. This is when he received a bone marrow biopsy, and was diagnosed with HLH. The three-month-old is currently undergoing his first round of chemotherapy while his parents desperately seek a stem cell donor that can save his life. The added challenge, however, is finding a matching stem cell donor that is of mixed ethnicity like him – half-Caucasian and half-Filipino.

His mother, Simone Janetta, spoke to the Canadian Broadcasting Corporation (CBC), saying, “We are just begging the community. Anybody who is half-Filipino [and] half-Caucasian, even if you’re any other ethnic minority, just get on the stem cell registry. You could safe a life, just like our son’s.”

Simone Janetta with her son Boston De Castro
Boston’s mother, Simon Janettta, holds her son while her undergoes chemotherapy. Their family is living in hospital to ensure Boston receives round-the-clock medical care.

Her plea was heard not only by the CBC, but by the Prime Minister of Canada himself, Justin Trudeau, who took to social media to share Boston’s story. “Can you save Boston’s life? There are two ways you can help: If you’re half-Caucasian and half-Filipino, please reach out to Canadian Blood Services and see how you can become a stem cell donor. If you aren’t you can still share this story and spread the word.” The post has received over 23,000 likes and 11,000 shares on Facebook already.

Donors must be between 17-35 years of age, with a preference for males, to reduce post-transplant complications. According to the Canadian Blood Services, only 3.5% of stem cell donors in the database are of mixed ethnic background. Because HLH is believed to be genetic, the donor must be unrelated to Boston as well.

Boston’s father, Rex De Castro, added, “I’m kindly begging anyone with a mixed-race ethnicity to donate their stem cells to help my son survive. The chemotherapy and the steroids [are] a temporary fix, and he needs the stem cell transplant really bad.”

Rex De Castro holds his two children
Rex De Castro, Boston’s dad, cuddles his 2-year-old daughter, Beatrix and newborn son, Boston. Both Beatrix and Boston suffer from rare health conditions.

A GoFundMe page has been setup for Boston, which has garnered over $25,000 in donations thus far. The donated funds will be used to relieve some of the monetary stress associated with the De Castro family having to live in hospital, and also, towards the bone marrow match. Many people have posted encouraging words on Boston’s GoFundMe page, urging him and his family to stay strong.

To learn more about HLH, check out this YouTube video by the Cincinnati Children’s Hospital. To read more about Boston De Castro’s story, check out his story on the CBC news website. And, if you know anyone who could potentially be a stem cell match for Boston or other mixed ethnicity patients, please consider sharing this story with them; you could save a life.