An adult man with spinal muscular atrophy (SMA) had been born with limb weakness that progressed to respiratory muscle weakness. Though able to sit independently since childhood, he was never able to walk. Due to the high cost of medication in his home country, he was unable to receive treatment, so he moved to the United States at age 36 to seek therapy for his SMA.
Multidisciplinary MDA Care Center optimizes patient outcomes
The patient came to the UCSF Neuromuscular Clinic, where he was seen by Madina Tugizova, MD, a neurologist with expertise in the diagnosis and treatment of neuromuscular disorders. UCSF is designated by the Muscular Dystrophy Association as an MDA Care Center, which Tugizova co-directs. She prescribed Evrysdi (risdiplam), an oral medication taken daily. “He tells me his energy level is higher and he feels stronger,” she said. “I think this is really going to be a game changer for him – someone who’s never been treated and is now on a disease-modifying therapy.”
Through the clinic, the patient receives physical, occupational, respiratory, nutritional, and speech and swallowing therapy. He’s also been connected to dental care and a social worker who helped him find housing and adjust to daily life in the United States. “Each member of our multidisciplinary team has been able to optimize his care from a different perspective,” Tugizova said.
High-volume center specializing in all neuromuscular diseases
As an MDA Care Center, the UCSF Neuromuscular Clinic provides high-quality, comprehensive care for all neuromuscular diseases, including muscular dystrophies; myopathies; and motor neuron, peripheral nerve, ion channel, mitochondrial, and neuromuscular junction diseases.
Patients have access to the latest therapies and a wide range of specialists, such as neurologists, pulmonologists, occupational and physical therapists, speech and respiratory therapists, social workers, nutritionists, genetic counselors and orthotists. These experts work as a team to identify each patient’s needs and manage their symptoms, helping to maximize mobility, comfort and quality of life.
“In the past year, we've significantly increased the scope of our clinic and the available number of appointments,” Tugizova said. “We specialize in all the conditions that fall under the MDA umbrella.”
Neurology and neurosurgery research and treatment take place within the UCSF Weill Institute for Neurosciences.
To learn more
UCSF Neuromuscular Clinic
Phone: (415) 353-2273 | Fax: (415) 353-2898
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