Claire Bergstrom Johnson, now a neuroscientist at the University of Oxford, has identified a type of antibody that may play a significant role in chronic inflammatory demyelinating polyneuropathy (CIDP), a rare autoimmune disease that affected her twin sister, Maegan. This discovery, stemming from a lifelong dedication sparked by Maegan's childhood illness, could pave the way for new diagnostic and treatment approaches.
Maegan Bergstrom Johnson's health took a dramatic turn at age seven when she collapsed in her school playground. Initially dismissed by some clinicians and misdiagnosed multiple times, including with Charcot-Marie-Tooth disease and Guillain-Barré syndrome, her condition continued to deteriorate. Her family, including their veterinarian mother and clinical psychologist father, embarked on a long journey seeking answers, which eventually led them to the Mayo Clinic. There, Maegan was diagnosed with CIDP, an autoimmune disorder where the immune system attacks the protective myelin sheath around peripheral nerves, causing muscle weakness and severe pain.
CIDP affects approximately 5,000 people in the UK, with around 650 new diagnoses annually, and currently has no cure. While treatments like steroids, intravenous immunoglobulin, and plasma exchange can help manage symptoms and improve mobility for many, they do not offer a complete recovery for all patients and do not work for everyone. Maegan's journey involved extensive treatment and a three-year recovery period before she could walk with assistance.
The profound impact of Maegan's illness on the family, including Claire's feelings of guilt for being the