If you or a loved one is living with pulmonary hypertension (PH), you’ve probably spent a lot of time researching the condition and trying to understand the most essential information about its causes, symptoms, and progression. But even the most detail-oriented researchers may not know every fact about PH, because the disease has so many variables from one person to the next.

By learning these five lesser-known facts about PH, you can deepen your understanding of the condition. Ultimately, more knowledge can empower you to self-advocate as you travel along your pulmonary hypertension journey.

Fact 1: Most People With PH Don’t Inherit the Condition

Some people may develop pulmonary hypertension because of their genetics, but this isn’t the case in most diagnoses of the condition. In about 20 percent of PH cases, inherited gene mutations actually cause the condition to develop, according to Cleveland Clinic. But even having the genes that put you at risk for PH doesn’t mean you will develop it; many factors have to come into play.

For those who carry the gene responsible for most cases of inherited PH — known as bone morphogenetic protein receptor type 2 (or BMPR2) — about 14 percent of males and 40 percent of females will go on to develop PH, per Cleveland Clinic. People with a family history of PH can get tested to see if they have the gene. A genetic counselor can explain what the results might mean.

Fact 2: PH Is Most Common in Women

According to the Centers for Disease Control and Prevention (CDC), pulmonary hypertension is more common in women than men.

Although the cause of this discrepancy is unclear, one reason may be that estrogen can be a risk factor. It has the potential to damage the heart’s lower-right side. However, even though women develop PH more often, they tend to have a better prognosis (outlook) than men after diagnosis. Researchers are still studying why this is the case.

When it comes to age, PH usually develops in people who are between the ages of 30 and 60.

Fact 3: It Usually Takes More Than a Year To Get an Accurate Diagnosis

Although PH symptoms are typically noticeable early in the course of the disease, people with the condition are not always diagnosed right away. One study found that an average of nearly four years (47 months) passed between the time people developed their first symptom and the time they received a definitive diagnosis. During this period, people with symptoms visited primary care providers an average of five times and saw specialists about three times prior to being diagnosed.

There are several reasons why it may take a long time to get an accurate pulmonary hypertension diagnosis. Sometimes signs and symptoms don’t show up at the outset of the disease, and it can progress very slowly. Furthermore, once a person develops noticeable symptoms such as shortness of breath, a doctor may mistake those low oxygen levels as an indicator of asthma or another respiratory issue. In addition, physicians do not regularly screen people for PH, which could also delay diagnosis.

Fact 4: PH Was Discovered More Than a Century Ago

Some people are unaware of what PH is until they’re diagnosed, but that doesn’t mean the condition is a new phenomenon. In fact, German physician Ernst von Romberg first described PH in 1891. During autopsies, he diagnosed what he called “pulmonary vascular sclerosis,” although the cause of the disease was a mystery.

Years later, the condition was studied in more depth, and physicians found better ways to diagnose, treat, and manage it.

Fact 5: Pulmonary Hypertension Is Among the Highest-Risk Conditions During Pregnancy

People with pulmonary hypertension face an increased risk of morbidity and mortality during pregnancy when compared to those without the condition. If you’re considering getting pregant, you should consult with a multidisciplinary team to maintain health and safety during the pregnancy.

Talk With Others Who Understand

On myPHteam, the social network for people with pulmonary hypertension and their loved ones, more than 46,000 members come together to ask questions, give advice, and share their stories with others who understand life with pulmonary hypertension.

Which pulmonary hypertension facts do you find most compelling? Share your experience in the comments below, or start a conversation by posting on your Activities page.