Both Sides Now: The Before and After of CIDP’s Diagnostic Journey

Crystal Sada

(Credit: Avalere)

I was 51 when I completed my first half marathon, feeling alive with every step. But a few years later, as I was training for an upcoming race, a bizarre tingling sensation disrupted my rhythm, starting in my upper lip and spreading quickly to my lower lip, cheeks, hands, and feet.

At first, I brushed it off, thinking that it was just a symptom of my thyroid disease which can sometimes cause neuropathy. So, I plowed through the discomfort, as many women do. But then it got worse; I couldn’t feel my tongue when I ate, struggled to get up from the floor after bathing my dog, and had trouble driving.

That’s when my husband Jai said to me, “You need to see a neurologist.” Three months later, I was diagnosed with chronic inflammatory demyelinating polyneuropathy (CIDP), a rare, often progressive, immune-mediated neuromuscular disorder of the peripheral nervous system that impacts approximately 34,000 patients in the U.S.¹ For me it caused motor and sensory issues in my arms and legs and neuropathic pain and fatigue.

While I was diagnosed with CIDP in a matter of months, for some patients it can take years. An estimated 47% of CIDP patients are misdiagnosed¹, leading to delayed treatment and highlighting the significant gaps in addressing the needs of the CIDP patient community.

Unmet needs exist for treatment as well. Among the 24,000 patients currently undergoing CIDP treatment¹, many experience dissatisfaction with the current treatments available and residual neurological side effects.

When it comes to new treatment opportunities, it's important not to become complacent. Personally, I have experimented with treatments, even switching up those that have shown effectiveness. After being taken off intravenous immunoglobulin, known as IVIG in 2018, I spent 6 months in the hospital—a decision I often reflect on and wonder about the "what ifs." Looking ahead, I am excited for innovation and transformative therapies that could revolutionize patient care.

This June marks the 10-year anniversary of my CIDP diagnosis. Looking back at my journey, I feel conflicting emotions of both pride and grief. I think of the Joni Mitchell song "Both Sides Now," where I see my diagnosis as a double-edged sword grappling with the daily pains and obstacles that go hand-in-hand with CIDP yet admiring the person I’ve become despite it all. I've embraced this new reality. Small victories are now big achievements. I’ve learned that nothing in life is guaranteed.

For me, CIDP meant saying goodbye to my corporate job and starting a new chapter. I found my passion in volunteering and advocating for CIDP research. I became seriously involved with Shining Through CIDP, a national awareness campaign launched by argenx that provides support to CIDP patients and their caregivers through information, practical advice, and sharing authentic experiences, fostering a community of support and empowerment.

CIDP has reshaped me in ways I never imagined, revealing depths of resilience and courage I never knew I had. And while the road ahead may be uncertain, I face it, knowing that every step forward is a victory.

REFERENCES
1. IQVIA Longitudinal Access and Adjudication Data (LAAD) Data from May 2018-April 2023. Accessed May 24, 2024.

Crystal Sada lives in Eltingville, NY and this year marks a decade since her diagnosis of CIDP. She recently became the face of “Shining Through CIDP,” a national awareness campaign by argenx that includes a TV spot, a patient-engagement website, a PBS Medical Stories documentary, and a reality mini-series: “You, Shining Through.” The campaign's goal is to support patients with CIDP and their caregivers by delivering trustworthy information, helpful tips, and sharing real-life stories designed to foster a sense of community and empowerment.