Patient Corner

CCHS

Light Up Social Media for CCHS

“Fireflies are tiny messengers that whisper in the darkness.” ~Anonymous   There are only 1200 cases in the world of Congenital Central Hypoventilation Syndrome (CCHS). Alone, our light is dim and our whispers soft. But with your help, our light will shine bright and our voices will be heard. Help us LIGHT UP SOCIAL MEDIA […]

 

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, this […]

 
Marissa

Marissa Overcomes New Obstacle: Obstruction

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 Sleep […]

 
Ryo

Since 2001, Ryo has been pacing 24/7 with the Avery Breathing Pacemaker

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 Breathing Pacemaker at Fujita Health University. Five short months later, he […]

 

Pacing since ‘94, Willie proclaims, “You Rock Avery!”

In November 1993, Willie was paralyzed after diving into the pool at his high school. Thanks to his quick thinking friends, he was airlifted to Johannesburg General Hospital in South Africa. In July 1994, Willie was implanted with the Avery diaphragm pacemaker. Willie first heard of the pacer when his General Practitioner had told him […]

 

Quadriplegic Pacing 24/7 with Avery Breathing Pacemaker

In 2002, at the age of 52, Dalen fell from a ladder and was rendered a C2 quadriplegic and ventilator dependent. In 2014, Dalen was implanted with the Avery diaphragm pacemaker to replace his mechanical ventilator.  He is now pacing 24/7, and is enjoying his freedom from the ventilator. Since being implanted, his health has […]

 

Mother Sees Daughter Graduate Thanks to Avery Pacers

  Tina lives in Tennessee with her husband and daughter. Tina suffered with pneumonia for nine months starting in October 2008. Doctors later diagnosed Tina with a rare and congenital condition, Alpha-1 Antitrypsin. The deficiency of Alpha-1 can cause lung diseases in adults, and therefore is referred to “genetic COPD.” “I am doing great, I pace […]

 

CCHS Patient After Two Years on Avery Pacers

Anna was born in Denmark in 1996. She was diagnosed with CCHS at 11 months old. Before getting the pacers, she used a VPAP bi-level machine as her primary means of ventilation.  She was implanted with the Avery Breathing Pacemaker in 2014. She is currently in college studying business and plans on becoming a ski […]

 

CCHS Patient Makes Major Accomplishments Being on Breathing Pacemaker

Nico is a 28-year-old man with CCHS living in New York, USA. He has been pacing since 2006. He earned his MPA in 2013 and has worked with nonprofit organizations in New York, California, and Texas. He is the only CCHS patient to serve two yearlong terms in AmeriCorps. Nico is a board member and […]

 

Avery Breathing Pacemaker helps maintain an active lifestyle

Anytime David went into a relaxed state his O2 levels would drop. This led to his diagnosis of Adult Onset Hypoventilation Syndrome. In October 2014, David was implanted by Dr Samuel Chesire at Stanford University medical center to allow him freedom from mechanical ventilation. David lives in Pioneer, California overlooking the beautiful Sierra Mountains. He […]