Eliza Johnstone’s Vasculitis Diagnosis Came Late, She Now Champions Early Diagnosis for Others

Eliza Johnstone, a 19-year-old living in the United Kingdom, feels like she is slowly getting her life back after a five-year journey through a vasculitis diagnosis and treatment that is finally working.

She reached out to tell her story because she knows vasculitis is rare and easily misdiagnosed, especially when, as in her case, the symptoms are similar to an infection.

“If one person can be helped by my story, I would forever be grateful,” Eliza said. “I cannot imagine my worst enemy going through the pain and trauma that I went through.”

By telling her story, she hopes people will donate to the Vasculitis Foundation to support the foundation’s mission to ensure everyone gets the high-quality health care they need, when they need it. She supports the fellowships and grants for training the next generation of vasculitis specialists and researchers, and advocates for vasculitis research to improve quality of care.

Eliza’s vasculitis journey began in October 2019 when she was 15 and began suffering mild ear pain. Her doctor diagnosed her with an ear infection and prescribed antibiotics. Eliza said she told her mother she knew there was something else wrong, but she followed orders and took the prescription without any relief.

“I was back and forth from the doctors every week for about 2 months whilst being told it was an ear infection,” she said. She was given antibiotics and pain killers, but couldn’t get relief. She developed vertigo and lost sleep because of the pain and other symptoms. At the end of 2019 she lost her hearing.

Surgery Leads to Diagnosis, But Care is Delayed

At that point she was in and out of her local hospital, but nothing was working to help her. Finally, one of her doctors suggested grommet surgery to insert a small ventilation tube into her eardrum. The surgery revealed polyps in her ears, leading to her vasculitis diagnosis.

Once she had the diagnosis she was referred to an ENT specialist, but the referral never reached the specialist and by early 2020 Eliza was completely deaf and was suffering from other symptoms as well. Her vertigo was so severe, she was unable to get out of bed. A doctor who came to the home to treat her, sent her to the hospital.

“He said “enough is enough, you’ve been backwards and forwards for 3 months,” Eliza explained. She was sent to her local hospital to the children’s unit on January 23, 2020 and was told she had to be transferred to a hospital further away because her kidneys were failing.

“My Kidneys had gone down to 10 percent,” Eliza said. “I was unable to keep food down and I was completely deaf. I couldn’t move any of my joints.”

Deaf and on Dialysis

The hospital inserted a dialysis line and immediately put her on dialysis for a week. Eliza said she can’t remember much from that week, but she was fitted with hearing aids so she could communicate with her doctors. They started her on steroids and chemotherapy and Immunosuppressive drugs to treat the vasculitis. She was in the hospital for two weeks before she could return home and then traveled back and forth to the hospital three days a week.

“I felt so vulnerable,” she said. She also was unhappy that her life as a teenager had been knocked off kilter. “I was unable to go back to school and sit my exams like everyone else.”

But there was more to come.

In June 2020, her vasculitis team found blood clots on her lungs and a blood clot in a major vessel near her heart. She was taken to the Intensive Care Unit where she was given IV blood thinners after her specialist called in another expert to consult on how to treat her.

Then in 2021 her airways began to shrink.

“I was struggling to walk, to speak and sounded like Darth Vader when I was sleeping,” Eliza said. She has had five balloon dilation surgeries and more steroids to keep the inflammation under control.

“After a dozen Cyclophosphamide treatments and lots of hair loss and tears, I was given Rituximab infusions and it is managing to keep my GPA under control,” Eliza said.  “I am now nineteen and still have to have Rituximab infusions every 6 months.”

Treatment is Working

While she still takes multiple medications, including blood thinners and antibiotics, as well as her infusions, she is grateful.

“My Kidneys work completely fine now,” she said. “I will forever be deaf, but wear hearing aids.
My hair has grown back and I feel like I am slowly getting my life back.

Her new mission is to educate others and to be part of the patient support community so no one else has to go through what she has. She knows early diagnosis might have saved her hearing and could have prevented her from missing so many milestones through her teenage years. If you can help support Eliza in her efforts to improve early diagnosis through more education, research, fellowships and patient support please donate today.