Client Profile

International CCHS Conference 2018

         5th International CCHS Conference: The Future is NOW Priorities, Partnerships, and Patient Voice When: June 20-23, 2018 Where: Chase Park Plaza, St. Louis, MO www.chaseparkplaza.com You can register for the conference at www.cchsnetwork.org   The CCHS Network, Children’s Hospital, Los Angeles, Seattle Children’s Hospital, and the European Union Congenital Hypoventilation Syndrome (EUCHS)... Read More

Attending Medical School With The Avery Diaphragm Pacer

In 2011, Cassandra started having several cases of pneumonia which led to a diagnosis of hypersensitive pneumonitis. Even though the doctors aren’t 100% sure of what Cassandra had, they referred to it as Acquired Central Hyperventilation Syndrome. Cassandra was sent to Uppsala Sweden because the doctors there are very experienced in treating those with diaphragm... Read More

Understanding Mechanical Ventilation for Quadriplegia

One of the major issues facing persons with quadriplegia is the need for breathing assistance. While an injury at the C5 vertebrae or lower typically does not affect breathing, injuries above the C4 do often require ventilatory assistance. Individuals with injuries at the C1 and C2 level are dependent on assistance for breathing. Typically,... Read More

Marissa

Marissa, a twenty-seven-year-old nursing student, has been pacing since 2007. She was diagnosed with CCHS at three weeks old. She had a trach and was mechanically ventilated at night while asleep until she was paced at age 18. During a sleep study conducted in late 2015, it was discovered she was suffering from Obstructive... Read More

Ryo

In 1999, Ryo became a quadriplegic because of a traffic accident with his motorbike. He remained in the hospital for 15 months tethered to a mechanical ventilator. After 15 months in the hospital tethered to a mechanical ventilator, Ryo was implanted with the Avery Diaphragm Pacing System at Fujita Health University. Five short months... Read More