Spoonie – Autoimmune Warrior

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

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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.

Christopher Cross Nearly Dies from COVID-19, Temporarily Paralyzed by Autoimmune Disease

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Famed singer-songwriter Christopher Cross recently detailed his excruciating battle with COVID-19 in an exclusive interview with CBS.

In the interview, the 69-year-old Grammy winner described his ordeal as ‘the worst 10 days of [his] life,’ saying that he had a number of ‘come to Jesus moments’ where he was left begging for his life from a higher power.

Cross states that in early March, when the pandemic had just struck North America, he and his girlfriend Joy were touring in Mexico City for a concert. Upon their return to the United States, they fell ill and ended up testing positive for COVID-19.

“Nobody knew about masks, or anything like that,” Cross said. “No one wore masks on the plane, no one was doing that. We weren’t made aware that it was a problem.” In total, he and his girlfriend were sick for about three weeks’ time. While Joy continued to get better, Cross got continuously sicker, landing him in the intensive care unit at the hospital for 10 days.

In April, Cross says he finally began to feel better, and ended up going to the supermarket. However, when he returned home, his legs completely gave out. That’s when he was diagnosed with Guillain-Barre Syndrome (GBS), a neurological autoimmune disease which causes the body to attack its own nerves. His doctors believe that he developed Guillain-Barre Syndrome as a direct result of COVID-19.

Describing his COVID-19 and Guillain-Barre diagnosis, Cross says tearfully, “I couldn’t walk, I could barely move. And so, it was certainly the darkest of times for me…It really was touch-and-go, and tough.” He became paralyzed from the waist down, and his hands were paralytic as well; being a professional musician, he was concerned he would never be able to play the guitar again.

Guillain-Barre is one of many devastating effects that have been reported by COVID-19 surviv o rs. Early in the pandemic, disturbing reports came out about multisystem inflammatory syndrome, an autoimmune complication in children who had been affected by the virus. It is thought to be similar to Kawasaki disease, an inflammatory condition affecting the heart’s coronary arteries.

Though Cross himself was only temporarily paralyzed by Guillain-Barre, he reports that he is still feeling the impact of this neurological autoimmune disease now. Initially, he used a wheelchair, and though he no longer needs it, he now relies on a cane as his mobility aid. He also suffers from nerve pain, brain fog, memory loss and issues with his speech.

*Christopher Cross undergoes physical therapy to heal from the affects of Guillain-Barre and COVID-19.*

Last month, Cross shared further details on his Instagram page about his grueling recovery, and paid tribute to the medical staff that helped him during that harrowing time, saying, “I’m grateful for my care team, especially my physical therapist, who has helped me to build strength and walk again.” He continued, “I realize that I am lucky to have survived COVID-19 and be on the mend from GBS. Most of all, I am blessed to have the love and support of many people.”

Though he’s recovered from the coronavirus, and has a 90% to 100% prognosis of making a full recovery from Guillain-Barre, Cross explained that he still wants to share his story to help others. “I felt it was sort of my obligation to share with people: ‘Look, this is a big deal…you’ve got to wear your mask. You’ve got to take care of each other. Because this could happen to you.'”

As part of his healing, Cross is turning to his music, which has always been a source of solace for the singer-songwriter. And, he can’t wait to get back to touring…when it’s safe to do so, of course!