First Ever CTEPH Awareness Day On November 18th

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by Isaura Santos |

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November 18th has been officially named chronic thromboembolic pulmonary hypertension (CTEPH) Awareness Day. This will be the first ever awareness day dedicated specifically to CTEPH.

Chronic thromboembolic pulmonary hypertension is caused by chronic blood clots in the lungs that cause pressure in the pulmonary arteries and the right side of the heart. CTEPH is the only form of pulmonary arterial hypertension (PAH) that can actually be cured through a pulmonary thromboendarterectomy (PTE), a surgical procedure that involves opening the chest and removing large portions of the clots. It is a highly invasive procedure, however, that it is only performed in a few clinical centers in the country, and not all CTEPH patients are qualified for PTE surgery.

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The creation of a CTEPH Awareness Day is significant since it is a disease that can be cured and has approved medications to treat the condition. In addition, proper diagnosis must be made once patients and their doctors identify a high risk for the disease, as sometimes patients live for years without knowing they have CTEPH. The Awareness Day is intended to remind the community that every patient with a pulmonary hypertension diagnosis must be screened for CTEPH. Ventilation perfusion scan (VQ scan) and pulmonary angiography are tests that can be used to diagnose CTEPH.

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When a CTEPH diagnosis is missed, a patient that could be cured may be subjected to very expensive PAH therapies with difficult side effects and further disease progression. Clots from CTEPH continue to block the blood flow to the lungs, leading to heart failure and eventually death.

To participate in  CTEPH Awareness Day, advocates for increasing awareness of the disease are encouraging those at risk for CTEPH to learn more about the disease; talk about it to friends, colleagues, and family members; and share information through social media. CTEPH awareness can make a major difference in treatment success and patient outcomes.

A Conversation With Rare Disease Advocates