Author: Carri Levy-Creator of Behind the Mystery: Rare & Genetic
Misdiagnoses can be fatal
Date:23 February 2016 We did a story on Behind the Mystery:
Rare & Genetic series about an incredibly healthy woman in our armed forces, who collapsed one day while overseas.
Below is the information on the disease. If you click on the link, you can see her journey and also, quite possibly, save a life.
"CTEPH is a rare type of pulmonary hypertension (PH). In CTEPH, a thrombus (clot-like mass) gets stuck to the lung’s blood vessel wall and blocks blood flow. CTEPH is frequently underdiagnosed and frequently undertreated.
The most common symptoms are: shortness of breath with exercise/activity, fatigue, tiredness or weakness, a depressed mood.
It’s difficult for a doctor to tell that you definitely have CTEPH, based on symptoms alone, because they are similar to those of other conditions such as pulmonary hypertension (PH).
If a doctor suspects you have CTEPH, you would undergo some specialized tests.
And if you’re diagnosed, your doctor will discuss treatment options with you, including surgery."
Watch this to learn more!