For Claire Bergstrom Johnson, one moment from her childhood remains impossible to forget.
At just seven years old, she watched her twin sister, Maegan, suddenly collapse on their school playground without warning.
At first, Claire believed her sister was pretending.
Teachers also assumed it might be misbehavior until Maegan explained that she simply could not stand.
Although she managed to walk later that day, her balance had noticeably deteriorated, marking the beginning of a frightening medical journey that would reshape the lives of their entire family.
Early Warning Signs Had Gone Unnoticed
Looking back, Maegan’s parents realized there had been subtle clues that something was seriously wrong.
She had become unusually clumsy, often bumping into objects and crying out in pain.
Even routine tasks such as walking downstairs had become difficult, forcing her to grip the handrail and carefully place both feet on every step.
Concerned by her worsening condition after the playground collapse, her parents sought medical help, beginning a long search for answers.
Misdiagnoses Delayed Life-Saving Treatment
Initial blood tests failed to reveal the cause of Maegan’s symptoms, and doctors first diagnosed her with Charcot-Marie-Tooth disease, an inherited nerve disorder.
As her condition rapidly worsened, specialists later changed the diagnosis to Guillain-Barré syndrome, another neurological illness affecting the body’s peripheral nerves.
Despite receiving treatment, Maegan continued to decline, leaving doctors struggling to explain why she was not improving.
Her family repeatedly raised concerns but often felt their worries were dismissed, with some medical professionals questioning whether they were overreacting.
A Devastating Diagnosis Finally Brings Answers
Within weeks, Maegan’s health reached a critical stage.
She lost the ability to walk, became confined to a wheelchair, and eventually suffered paralysis in her legs while her arms grew too weak to support her body.
Doctors feared the disease could soon affect the muscles controlling her breathing, prompting an emergency trip to the Mayo Clinic.
There, specialists finally identified the real cause of her illness—chronic inflammatory demyelinating polyneuropathy (CIDP), a rare autoimmune condition in which the immune system attacks the protective coating surrounding peripheral nerves.
The damage disrupts communication between the brain and muscles, leading to progressive weakness, pain, numbness, and balance problems.
Living With a Rare Autoimmune Disease
CIDP affects only a small number of people each year, making diagnosis particularly challenging.
Experts explain that symptoms usually develop gradually over weeks or months and commonly include persistent tingling, numbness, muscle weakness, poor balance, and increasing difficulty walking.
If left untreated, the inflammation can permanently damage nerves and result in lifelong disability.
Although treatments such as steroids, intravenous immunoglobulin therapy, and plasma exchange can slow or control the disease, there is currently no cure, and patient outcomes vary significantly.
Recovery Took Years, Not Weeks
Following intensive treatment, Maegan slowly began to regain strength.
She required weekly immunoglobulin infusions and spent years rebuilding her mobility.
It was nearly three years before she could leave her wheelchair behind and walk again with the help of a frame.
Watching her sister endure years of rehabilitation deeply affected Claire, who struggled with feelings of guilt for being the healthy twin while spending much of her own childhood in hospitals.
A Personal Mission Inspired a Scientific Career
Determined to help others facing the same illness, Claire pursued a career in neuroscience.
Her journey was far from straightforward. After multiple unsuccessful applications to PhD programs in the United States, she spent several years working in biotechnology before earning scholarship offers from both Oxford and Cambridge universities.
She chose the University of Oxford, where her doctoral research focused on rare autoimmune nerve diseases resembling CIDP.
An Unexpected Discovery Opens New Possibilities
For nearly three years, Claire searched unsuccessfully for evidence linking one class of antibodies, known as IgG, to certain nerve diseases.
Instead of abandoning the project, she shifted her attention to a different antibody called IgM—a decision that led to a breakthrough.
While working alone in the laboratory one evening, she observed the IgM antibodies attaching strongly to nerve cells under a microscope, suggesting they could also contribute to diseases such as CIDP.
The emotional discovery marked a turning point in her research and immediately prompted her to share the news with Maegan, who enthusiastically celebrated the breakthrough.
Researchers Hope to Improve Future Treatments
Claire’s findings have attracted significant attention among neurological researchers.
Her mentor, Professor Simon Rinaldi of the University of Oxford, believes the discovery could help scientists better understand why some patients respond differently to existing treatments and eventually lead to more targeted therapies.
Researchers are now investigating whether IgM antibodies play a broader role in CIDP, potentially improving both diagnosis and treatment for patients with the rare disease.
Hope for Families Facing Rare Diseases
Today, Maegan is in remission and no longer requires ongoing treatment.
She works as a software engineer, walks independently, and recently celebrated her wedding.
However, she continues to experience lasting effects from the illness, including fatigue, occasional severe abdominal pain, and foot drop that affects her mobility.
Claire remains committed to advancing research into rare neurological diseases, believing her work is inseparable from her sister’s experience.
She hopes future discoveries will lead to earlier diagnoses and more effective treatments, ensuring that other families avoid the uncertainty and suffering her own family endured.
