The late Donna Castle
One family’s medical trials after one of their relatives died from a rare disease have inspired them to spread the word and help others.
Kaelyn Kastle, a singer with a large social media following, said she was able to help a woman in the United States who was struggling to figure out what was wrong with her young son, who turned out to be suffering from the same autoimmune disease that killed her mother, Donna.
“I just wanted to tell her story – you never know who it might save,” she said The Royal State Gazette.
Mrs. Castle died of an undisclosed illness, sarcoidosis, which ended her athletic career prematurely at a young age.
Decades later, the chronic disease returned as renal pulmonary vasculitis, puzzling doctors in Bermuda.
Doctors initially thought her persistent dry cough was one of the hallmark symptoms of Covid-19.
Kaelyn said doctors “couldn’t figure out what it was and tested for everything including pneumonia” in 2022.
The dry cough developed into cold symptoms and then became aggressive.
“She couldn’t breathe,” Kaelyn said. “Her whole airway was blocked.”
Sarcoidosis causes the immune system to attack the body in different ways. It often affects the lungs, causing shortness of breath — known as pulmonary sarcoidosis.
The disease’s attack on Mrs. Castle’s kidneys was the renal part of the disease, while vasculitis was a devastating attack by the immune system on otherwise healthy blood vessels, causing chronic inflammation.
Her husband, Kenneth “Jack” Castle, said: “What we want to do is explain to the public what my wife’s condition is.
“Since she passed away, people have asked us about it and said they didn’t know she had ‘cancer.’ People ask a lot of questions that show they just don’t know what she had.”
Kaelyn, who thanked her mother for nurturing her talent as an artist, said the disease is “so rare that only about one in 100,000 people will get the disease.”
“Just some random person from Bermuda had it. But my big thing is I wanted to educate the public. I’m a social media girl. One story can change someone’s life.”
Mr Castle said: “My wife and I have been together since she was 17. Donna wanted to run for Bermuda in Jamaica.
“When she came back, she had breathing problems and was sent to Johns Hopkins. She was there for months. She was treated with steroids.”
Mrs. Castle seemed to improve. Her family said she was remarkable because she never seemed to get sick the rest of her life.
Her daughter explained: “It is known to occur at a young age, before the age of 25. It also comes back after the age of 45.
“My mother had it dormant in her body for 43 years.”
Mrs. Castle suddenly became ill in 2022. It started as a cold, with a dry cough caused by an inflammation caused by her own cells attacking her lungs.
Her family says they still have a lot of unanswered questions.
However, they suspected that Ms Castle’s use of turmeric, a spice believed to have anti-inflammatory properties, could have kept her symptoms under control.
They said doctors at the Bermuda hospital treated the patient with antibiotics, which they thought had an infection.
Eventually, Mrs. Castle was put on a ventilator, but the disease then spread to her kidneys, requiring constant dialysis.
The family flew her to Brigham and Women’s Hospital in Boston, where doctors spent 10 days trying to diagnose her condition before identifying sarcoidosis as the culprit.
Mr. Castle said, “They told me there were only 60,000 people in the U.S. who had it. It was really rare.”
Ms Castle’s condition was not curable, but she did take part in a medical study in which people were treated with a combination of steroids and the drug Rituxin, under the brand name Rituximab.
However, she had to be resuscitated twice in Boston due to cardiac arrest.
In May 2023, her family took her back in, but her illness eventually returned in the form of a new form of vasculitis, which led to a series of infections, followed by dizziness and weight loss, and finally a seizure.
Her husband and daughter said doctors in Bermuda again struggled to treat her until a doctor contacted Brigham and Women’s, where she returned for further treatment in April of this year.
Twenty days later, on May 17, she died there, with her husband at her side.
Kaelyn said, “The reason why it’s so important to spread this story is social media and TikTok.
“I use TikTok as a search engine. It’s practically as good as Google, so I’m part of the fight to keep TikTok.”
The hugely successful app is at risk of being banned in the US over data privacy concerns.
Kaelyn said she shared her research on TikTok and reached out to others involved in the medical fight against sarcoidosis, so the family could use their experiences to help others find treatment and feel less alone.
A few months ago, she left a comment, among the “thousands” of responses, on the page of a Connecticut woman desperately trying to figure out what was making her son so sick.
“Now she’s on the same journey with Rituximab,” Kaelyn said. “She said it saved her son.”
She added: “I feel like I’ve been able to do my part on social media.”
Donna Castle sent her daughter to her first singing lessons and bought her a guitar as a surprise, which Kaelyn still owns.
She said her mother’s “intelligence, creativity and work ethic have been instrumental in making me who I am.”
In her tribute to her mother, she said: “She did her job.
“As far as I know, there were still so many things my mother wanted to do with us before she left, so many plans she had, she will be with my brother forever [Casey]father and I.”