Multifocal Motor Neuropathy: Rare Disease Filmmaker Turns the Camera on Himself

According to a story from BBC, Xavier Alford woke up one morning with unusual tingling that affected his toes and fingers. Before long, his legs began to weaken. That was twelve years ago, when he was 30 years old. The doctors diagnosed him with a devastating, rare neurological disease called multifocal motor neuropathy. While the disease isn’t likely to be fatal, Xavier had to reckon with a reality that he would eventually lose the use of his limbs and hands.

Though a filmmaker by trade, Xavier was hesitant to share about his illness, but his wife Anna suggested that he make a film about his experience. This would be a way to open up about his diagnosis and confront the new realities he was facing.

About Multifocal Motor Neuropathy

Multifocal motor neuropathy is a rare, progressively condition in which the muscles of the limbs progressively weaken over time. The disease is often misdiagnosed as amyotrophic lateral sclerosis. Although the cause of the disease isn’t entirely clear, most scientists agree that the disease is autoimmune in nature, in which the immune system produces antibodies that attack a healthy component of the nervous system. Symptoms often first begin in the hands and include muscle atrophy, cramping, weakness, foot drop, wrist drop, and frequent muscle twitches. These symptoms gradually worsen in severity over time. Hot or cold temperatures appear to exacerbate symptoms. The most common treatment for multifocal motor neuropathy is intravenous immunoglobulin (IVIg), though immunosuppressants such as rituximab or cyclophosphamide may also be used. 80 percent of patients respond to IVIg and require regular infusions. There is no cure. To learn more about multifocal motor neuropathy, click here.

Xavier’s Story

Xavier decided to go forward with the project as his hands weakened to the point that just holding the camera was difficult. For the film, he decided to meet with patients living with Guillain-Barre syndrome (GBS), a related rare disease, to document their experiences. He spoke with Scott, a patient who was first diagnosed in his early 40’s and experienced almost total paralysis within just 32 hours (though he would eventually recover). Another patient was Rob, who experienced a similar rapid-onset paralysis in just a week’s time from symptom onset.

Xavier has been getting treatment with IVIg regularly and making the film has allowed him to have important conversations with his daughter Ami, 14, and son Louis, 11.

Learn more about Xavier’s film Locked In: Breaking the Silence here.

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