Immunology Innovation
Fighting for Every Milestone:
One Mother’s Journey Navigating CIDP
In the fall of 2022, Britt was envisioning an exciting year ahead full of new beginnings. She was 35 weeks pregnant with her first child, had recently started a new job, and was settling into a new home in a new town with her husband. Amid all the excitement, Britt began experiencing a strange sensation of tingling in her hands and feet. This seemingly small symptom marked the beginning of a long and difficult journey.
It was my first pregnancy, so I thought it was normal. But then a couple of days later, I started experiencing excruciating back pain.
— Britt
What followed was a six-month hospitalization and navigating a diagnosis she had never heard of. Britt learned that she was living with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) - a rare, severe, and progressive autoimmune neuropathy that causes debilitating weakness and numbness in the arms and legs.
Approximately
60,000 - 77,000
people are living with CIDP in the U.S. today.¹
For some, the disease begins subtly and progresses slowly, while for others – like Britt – progression happens fast. Regardless of the pace of progression, people with CIDP are commonly faced with a long search for answers about a complex disease that is not fully understood.²⁻⁵
Understanding The Science Behind CIDP
In people living with CIDP, the body mistakenly creates harmful antibodies, including immunoglobulin G (IgG) antibodies, that may play a role in damaging the protective coating surrounding nerve cells. This disrupts signals that the brain sends to the arms and legs. Research shows that the complement system, a natural part of the body's immune defenses, may also contribute to the inflammation and nerve damage seen in CIDP.⁶⁻¹¹
Common symptoms of CIDP include progressive weakness, numbness, pain, fatigue, problems with balance and difficulty walking or using the hands – challenges that affect a person’s ability to work, maintain their independence, and participate in routine activities of everyday life.¹²⁻¹⁷ These physical limitations can affect seemingly simple day to day tasks, from grasping and lifting objects to managing basic self-care.¹⁷⁻²¹
“CIDP is heterogeneous both clinically and biologically, which means there is still much to learn about the underlying mechanisms driving disease and treatment response.”
— Kevin Budding, Senior Clinical Scientist, argenx
Budding went on to explain, “You can compare it to a storm affecting a road network. The storm is the ‘immune attack’ on the nerves, and depending on where the storm hits, different roads can be affected. Similarly, some storms hit hard and fast, while others are weaker and last longer, all resulting in a different clinical picture for each patient.”
Navigating The Road to Diagnosis
The rarity and complexity of CIDP brings additional challenges. With no reliable biomarker to test for CIDP, and with symptoms that can be mistaken for other neuromuscular conditions, diagnosis can take up to several years.²,⁴ For Britt, pregnancy and postpartum symptoms made it even harder to identify what was wrong. Her husband, who is a nurse, was the first to suspect a neurological cause, and still, her path to diagnosis remained uncertain.
When Britt entered the hospital, she was initially misdiagnosed with a different rare neurological disorder. It was nearly a year after her first symptoms appeared when Britt was diagnosed with CIDP.
Alongside the physical impact of the disease, the emotional toll on Britt was significant. “I couldn’t even roll over to press the call bell at the hospital,” she recalls. “I was so scared I wouldn’t walk again, that I’d never be able to carry my son.”
She faced a new set of challenges when she returned home. “I thought that I would feel like myself and go back to my life to some extent,” Britt says. “It just was completely different. I needed to rely on my husband for absolutely everything, from showering to getting dressed. That’s a really tough experience.”
“We often hear from the CIDP community that symptoms like fatigue, pain, and the loss of independence are even more challenging because they are not visible to others, even to those closest to them.”
— Lisa Butler, President and CEO,
The GBS | CIDP Foundation International
Lisa continued, “Living with chronic ‘invisible’ symptoms can have a profound impact on relationships, how seriously their condition is considered by others, how quickly they get diagnosed, and how supported they feel throughout their journey.”
Finding a Way Forward Through Treatment
After starting treatment, Britt began the long road toward rebuilding. Recovery would take time, persistence and continued rehabilitation, but treatment marked an important turning point in her journey and gave her hope that she could begin rebuilding her strength and independence.
“At argenx, we're committed to continuing to innovate for people living with serious autoimmune diseases like CIDP,” explains Budding. “That means advancing new approaches, always with the goal of improving outcomes and helping patients achieve what matters most to them in their everyday lives.”
For Britt, progress came in increments as she continued to re-train her body through physical therapy – wiggling her toes, lifting two pounds, and finally being able to carry her son for the first time a year and a half into her journey. “That was where everything that I’d worked toward came to fruition,” explains Britt.
Raising Expectations for The Future
Through continued research into the immune mechanisms that drive CIDP, argenx is working to address the full complexity of the disease and support the diverse needs of this community. Researchers at argenx go to work every day with the goal of raising expectations for what living with CIDP can look like.
“Our passion comes from the opportunity to make a meaningful difference for people living with CIDP,” Budding shares. “Every day, we're working to deepen our understanding of the biology driving this complex disease so we can continue to translate that science into meaningful innovation for patients today and in the future.”
Britt’s own journey through uncertainty and hard-fought milestones is a reminder of what is at stake for every person living with CIDP and their families. No moment better illustrates the significance of the journey than the moment Britt shared with her son as they learned to walk within months of each other. “I beat Ollie, for the record,” she says. “But it was a great race.”
Those living with CIDP can learn more about argenx’s ongoing work and access additional community resources by visiting the CIDP section of the argenx website or the GBS-CIDP Foundation International website. You can also learn more about Britt by listening to her Untold Story.
Listen on:
References
- Miller-Wilson LA, et al. Neuroepidemiology. 2026;58:101848.
- Cocito D, et al. A. Eur J Neurol. 2010;17:289-94.
- Querol L, et al. J Neurol. 2021;268:3706-16.
- Van den Bergh PY, et al. Eur J Neurol. 2021;28:3556-83.
- IQVIA LAAD Data from May 2018 to April 2023.
- Mathey et al. J Neuro! Neurosurg Pyschiatry. 2015; 86(9):973-985. doi:10.1136/jnnp-2014-309697.
- Koike H et al. Ther. 2020;9:213-227. doi:10.1007/s40120-020-00190-8.
- Dziadkowiak E, Waliszewska-Prosół M, Nowakowska-Kotas M, Burdrewicz S, Koszewicz M. Pathophysiology of the different clinical phenotypes of chronic inflammatory demyelinating polyradiculoneuropathy (CIDP). Int J Mol Sci. 2021;23(1):179. doi:10.3390/ijma23010179.
- Querol LA, Hartung HP, Lewis RA, et al. Neurotherapeutics. 2022;19(3):864-873.
- Stascheidt F, et al. Acta Neuropathol. 2025 ;150-32.
- Caballero-Ávila M, et al. Front Immunol. 2025 ;16 :1575464.
- Al-Zuhairy A, et al. Muscle & Nerve. 2020;61:316-24.
- Van den Bergh PYK et al. Eur Neurol. 2021; 28 (11):3556-3583.doi:10.1111/ene.1459.
- Dyck PJB et al. Mayo Clin Proc. 2018; 93(6):777-793.doi:10.1016/j.mayocp.2018.03.026.
- Gable KL et al. Muscle & Nerve. 2020;1-8. doi:10.1002/mus.27038.
- Bunschoten C, et al. J Peripher Nerv Syst. 2019;24:253-59.
- Koike H et al. Neurol Ther. 2020;9:213-27.
- Querol L, et al. Nat Rev Neurol. 2017; 13:533-47.
- Dziadkowiak E et al. Int J Mol Sci. 2022;23:2-13.
- Karkare S, Blein, C. et al. Presented at the Professional Society for Health Economics and Outcomes Research 2025, May 13-16, 2025; Montreal, Quebec, Canada.
- Blein C, et al. Presented at the 2025 Muscular Dystrophy Association Clinical and Scientific Conference, March 16-19, 2025; Dallas, TX, USA.
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