The story of janet
I’m a 63 years old woman, and it wasn’t until I was 50 I found out I had one of my three rare diseases. I have two syrinx’s in my thoracic spine, when I was 56 I found out I have severe central sleep apnea, and then when I was 63, I was diagnosed with adult onset of narcolepsy with severe cataplexy. All of these were hard to get diagnosed. I understand the syrinx because mine is thoracic it was hard to find until good MRI’s were available. But when I was 50 and had to retire because I couldn’t stay alert no one did a sleep study until I was 56 to find the central sleep apnea, it was another six years until the doctors did the narcolepsy study to find it. My narcolepsy is so bad; I thought I was going to die before we found out what was wrong with me. There are no cures for any of my rare diseases just control and medication.
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