(StatePoint) November is Pulmonary Hypertension Awareness Month, and the American Lung Association, with support from Merck, is raising awareness about one form of the condition: pulmonary arterial hypertension (PAH).
PAH is a serious condition that can affect people of all ages. It occurs when the tiny arteries in the lungs become thickened and narrowed, which causes reduced blood flow through the lungs. This raises pressure in the pulmonary arteries and forces the heart to work harder to push blood through the narrowed vessels. While there is no cure for PAH, there is medication to help manage the symptoms and slow disease progression. Getting a correct diagnosis is essential because without the proper treatment, PAH can be fatal.
While often seen in adults, pulmonary hypertension, including PAH, can also affect children. When Jackson was diagnosed with pediatric PAH at 14 months old, his family started advocating for his care early. “From the very beginning, we’ve done everything we can to ensure he is getting the best treatment options,” Jayna, his mom says.
Once accurately diagnosed, Jackson’s family embarked on a journey of managing PAH in their young child, “We had to figure out how to manage a toddler with a subcutaneous pump. It was terrifying, but we knew it was what he needed,” says Jayna.
No matter the age of the patient, these key actions can help your family navigate a diagnosis of pulmonary hypertension:
Find a trusted PH specialist. A specialist will tailor your treatment specific to your needs. Being able to talk with your specialist is vital in developing your personalized care plan. As Jackson shares, “My doctor is amazing,” assisting him with a comprehensive healthcare plan and helping him navigate PAH as he transitions from childhood to adolescence.
Learn all you can about PH and PAH. Take the PH Basics course offered by the American Lung Association. This free, short online module is designed to help patients and caregivers understand symptoms, monitoring, treatment options and more.
Activate your support network. Join support groups and peer communities to build knowledge and resilience and receive emotional support. Jayna found an online pulmonary hypertension community of other parents, which made it “easier to cope, learn from others and feel less isolated,” and eventually became one of the community’s administrators.
Learn more about PAH this Pulmonary Hypertension Awareness Month at Lung.org/pah.
Being diagnosed with pulmonary arterial hypertension is life-changing. However, with trusted resources, support and a strong relationship with a specialist, it’s possible to better manage PAH and maintain a better quality of life at any age.
Photo Credit: (c) Lacheev / iStock via Getty Images Plus
