Allison’s Rare Breathing Disorder: Taking Life One Breathless Night at a Time

September 11, 2014

I have a rare breathing disorder called Congenital Central Hypoventilation Syndrome (CCHS). An hour after I was born I stopped breathing. Six months later I was diagnosed with CCHS – a rare disorder that causes the inability to breathe when asleep. I use a tracheostomy and a diaphragmatic pacemaker to help me breathe.

For the first nine years of my life I used a bi-pap machine at night. When I was ten my symptoms progressed and it was determined that I needed a trach. My so called “normal” life was over and an entirely new reality started where I was on a ventilator 24/7 and continuously monitored by nurses. Four years later, when I was 14, I had the diaphragm pacer implanted which allowed me to have a greater amount of freedom. Now I am 19 and starting my sophomore year of college at a school called Gustavus Adolphus in St. Peter, Minnesota. I am completely independent in my care and manage my medical condition by myself.

My advice to others facing a rare disease? Never give up hope. You never know what types of treatment and technology will show up. There is no cure for CCHS, but the technology that has developed since my diagnosis has allowed me to live a completely fulfilling life.

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