- CASE FILE
Idiopathic Subglottic Stenosis is a unseen rare disease that has me looking very healthy on the outside but I’m suffocating on the inside.
ABOUT THIS CASE FILE
I’ve had 15 surgeries in the last 6 yrs for Idiopathic subglottic stenosis. This condition causes my airway to grow closed with scar tissue. At one point, my airway was only open as wide as a drink straw. Mucus plugs are a very scary thing for people with this condition because it turns it into a life or death situation. Idiopathic subglottic stenosis is a rare disorder that affects women almost exclusively. The disorder most often occurs in women between the ages of 30 and 50, with 95% being Caucasian.
I was always a very active person, working at a Physical Therapy office & loved my hours spent in the gym. Now with having this condition it makes mundane things such as getting dressed a task. Life before this disease I was an extrovert, the life of the party & loved meeting new people. Now since the diagnosis, my voice has changed and at times I’m not sure even if anything will come out when trying to talk. People are always asking me if I have a cold or if my voice really sounds like this. It makes me embarrassed & now I’ve become more of an introvert. This unseen rare condition has me looking very healthy on the outside but I’m suffocating on the inside. I’m sure there are many other women out there being misdiagnosed everyday. I want to help them get the treatment they deserve & very much need!