(BPT) - "At first I was kind of like, what is that? What is CIDP? I've never heard of that. But then, the relief set in more than confusion … because at least there was a name to what I had."
Jamilah's days were once filled with vibrant activities like dance classes, crocheting, and running a photography business. Her life was active - a true reflection of her passion and creativity. But in September 2021, everything changed. Jamilah began to have trouble standing up and moving around. She experienced numbness and tingling sensations in her hands, and within weeks, these symptoms rapidly progressed, spreading to other parts of her body. Soon, she found herself confined to a wheelchair. Only later was she diagnosed with chronic inflammatory demyelinating polyneuropathy (CIDP). Today, her life has changed dramatically from those days filled with vibrant activities, with most of her time spent at home. Her CIDP care requires monthly visits to an infusion center, and she is forced to rely on a wheelchair to get around. Hoping to deepen awareness and understanding of CIDP, Jamilah is an advocate, sharing her story to highlight that recovery is not linear, but reclaiming joy in one's life.
Understanding CIDP
Chronic inflammatory demyelinating polyneuropathy, or CIDP, is a rare, debilitating, often progressive, immune-mediated neuromuscular disorder of the peripheral nervous system. This condition can lead to significant reductions in arm and leg function, frequent falls, and in severe cases, dependence on a wheelchair, rendering many individuals unable to work.
"CIDP can be debilitating and have a significant impact on quality of life. Many patients with CIDP require treatments that may be burdensome," says Lisa Butler, Executive Director of the GBS|CIDP Foundation. The effects of CIDP extend beyond physical limitations, impacting daily life at home, work, and school. A cross-sectional study assessing limitations in activities among 147 patients with CIDP found that 85% reported difficulty running, 80% reported difficulty standing for longer periods of time, and 75% reported difficulty dancing. Additionally, more than 75% of patients reported sensory deficits.
In the United States alone, approximately 24,000 people are currently being treated for CIDP, yet there remains a considerable unmet need for effective and manageable therapies. "Existing therapies have traditionally been limited to corticosteroids and plasma-derived treatments, which, while effective for many, present challenges for some patients," says Jeffrey Allen, M.D., Professor, Department of Neurology, University of Minnesota. Studies have shown an estimated 85% of patients require ongoing treatment with potentially time-consuming therapies and 88% of treated patients report residual neurological symptoms.
A New Era in CIDP Treatment
As new, targeted treatment options become available, patients stand to benefit from having an expanded arsenal of medications.
For Jamilah, her hope is to find a solution that could turn her dreams into reality - reviving her crochet business and launching a dance studio that welcomes both wheelchair users and differently abled dancers, giving them a place and community to express their creativity and passion for dance.
The potential of offering new innovative treatment options for patients like Jamilah and others living with autoimmune diseases is what motivates companies like argenx to continue innovating. "Every day, we are turning science into real solutions for patients suffering from severe autoimmunity," says Luc Truyen, M.D., Ph.D., Chief Medical Officer at argenx.
To learn more about CIDP and advancements being made in autoimmune diseases, visit https://www.argenx.com/. If you are interested in learning more about CIDP treatments, please speak with a healthcare provider.
