For Dr. Olitsky, advocating for people with pulmonary arterial hypertension (PAH) is deeply personal. This chronic lung disease has affected multiple members of his family, including his daughter and cousin.
PAH is a rare, progressive type of pulmonary hypertension that causes tiny arteries in the lungs to narrow and thicken, restricting blood flow. As pressure builds in the lungs, the heart must work harder to pump blood throughout the body, which can lead to serious complications over time.
A retired pediatric ophthalmologist, Dr. Olitsky dedicated his career to caring for children with eye conditions. Outside of his medical specialty, he became a passionate advocate for people affected by two rare diseases, PAH and hereditary hemorrhagic telangiectasia (HHT). He also served on the board of Cure HHT, an organization devoted to improving the lives of people affected by HHT, a rare genetic disorder that affects blood vessel development. Because HHT can occur alongside PAH in some individuals, his professional and personal experiences have given him a unique perspective on the challenges of living with and diagnosing rare diseases.
Through both his family's journey and years of advocacy, he has witnessed firsthand the uncertainty that can accompany a rare disease diagnosis. “I always encourage people to look beyond a single symptom and consider the bigger picture,” he said.
The Challenge of Recognizing PAH
PAH symptoms can develop gradually and are often mistaken for other conditions. Shortness of breath, fatigue and difficulty breathing during physical activity may seem easy to explain at first, making diagnosis difficult.
That was the experience for Dr. Olitsky's daughter, who waited months for answers before being diagnosed with PAH. Like many families affected by pulmonary hypertension, they found themselves searching for explanations while symptoms continued to progress.
"Knowing what questions to ask and where to seek care can make a tremendous difference," Dr. Olitsky said.
Why Specialized Care Matters
PAH is a complex disease that often requires ongoing monitoring, access to advanced treatment and coordination among multiple healthcare providers. That is why Dr. Olitsky is such a strong advocate for specialized care. Receiving care from an experienced PAH team can help ensure you receive the most appropriate treatment and support. "If you have a rare disease, finding physicians who truly understand it is incredibly important," Dr. Olitsky said.
He believes specialized care helps patients better navigate treatment decisions, manage symptoms and address challenges that can arise throughout their journey.
The Importance of Looking at the Whole Picture
One lesson Dr. Olitsky frequently shares is the importance of understanding family history and discussing all symptoms with healthcare providers. "When you live with a rare disease, family history matters," he said. "Sometimes the clues have been there all along, but no one has connected the dots."
For example, frequent nosebleeds are one of the most common signs of HHT, but in many families, they can become so familiar that they are considered ‘normal’ when they can really be a sign of a serious disease. Many patients may not even mention that they have multiple nosebleeds every day because they have grown up seeing other family members with nosebleeds, and it does not seem unusual. In people who are living with PAH, recurrent nosebleeds may be attributed to medications they are taking, which can make it even harder to recognize a possible underlying cause such as HHT.
For some patients, symptoms that seem unrelated or that can be attributed to a condition they have already been diagnosed with may provide important clues that help healthcare providers reach the correct diagnosis sooner. It can be especially important when conditions such as HHT and PAH occur together. Recognizing these connections is critical in rare diseases where delays in diagnosis remain common. Understanding your complete health history, family history and any other medical conditions you may have can help uncover connections that lead to more informed conversations with your healthcare team and, ultimately, the right diagnosis and care.
Becoming Your Own Advocate
Living with a rare disease often requires persistence. Whether it means seeking a second opinion, asking questions about symptoms or learning more about available treatment options, self-advocacy can play an important role in care.
Dr. Olitsky has seen the value of advocacy both personally and professionally. "It is hard to educate the general public and even healthcare providers about rare diseases," he said. "That's why patients and caregivers should not be afraid to ask questions and seek out reliable information."
He also encourages people to connect with trusted resources and support communities, which can provide education and connections to others who understand the challenges of living with PAH.
Being Aware of Rare Disease in Your Life
Reflecting on his family's experience, Dr. Olitsky hopes more people will recognize the signs of PAH, seek specialized care and trust their instincts when something doesn't feel right. "When symptoms don't add up, keep asking questions," he said. "Getting connected to the right specialists can make all the difference."
For people living with PAH, earlier diagnosis, expert care and access to trusted information can be powerful tools in navigating life with a rare disease.
Blog last updated: November 5, 2026
