Pulmonary Hypertension And Disability

Pulmonary hypertension (PH) is a rare and severe lung disease characterized by high blood pressure in the lungs. The disorder affects the pulmonary arteries, making them narrowed and thickened. Since these vessels are responsible for transporting blood from the heart to the lungs, the right heart ventricle needs to work harder to properly pump the blood. The stress created in the heart can cause enlargement and weakening of the organ and consequently right heart failure.

The most common symptoms associated with pulmonary hypertension include shortness of breath (dyspnea); fatigue; dizziness or fainting spells (syncope); pressure or pain in the chest; swelling (edema) in the ankles, legs and abdomen (ascites); a bluish color of the lips and skin (cyanosis); or irregular heartbeat. Due to these symptoms and severity of the disease, pulmonary hypertension and disability are often related, particular in late stages of disease or when not treated.

When And Why Is Disability Associated With Pulmonary Hypertension?

Patients who suffer from pulmonary hypertension are frequently on short term disability prior to diagnosis. Since they are not being treated for the disease, when they first seek out a specialist, the majority of patients are in class III or IV of Functional Classification of Pulmonary Hypertension, the equivalent to patients with PH resulting in marked limitation of physical activity, comfortable at rest, but experiencing dyspnea or fatigue, chest pain, or near syncope due to less than ordinary activity, or patients with PH and an inability to carry out any physical activity without symptoms, manifesting signs of right-heart failure, dyspnea and/or fatigue may even be present at rest, and increased discomfort during any physical activity.

Pulmonary hypertension is a disease that progresses with time, which means that between starting to experience difficulties and seeing a doctor, the symptoms can worsen, leading to disability. The patients usually remain in these situations during examination, diagnosis and the beginning of the treatments. Following these phases, there are patients that respond better to therapy, improving symptoms, gaining their independence again and being able to return to work, while others take longer to stabilize or need more intensive treatment.

One of the difficulties about coping with pulmonary hypertension is the unpredictability of the disease. Patients have better days and worse days, having no way of predicting when or how it occurs. Therefore, discussing routines and the capacity to work with a physician is recommended. In addition, other conditions like scleroderma or depression can exacerbate the symptoms, cause disability and prevent patients from working.

What Support Can Disabled Pulmonary Hypertension Patients Receive?

The Social Security Administration (SSA) has support programs for people struggling with disabilities. Each application is evaluated individually taking into consideration the severity of the condition, symptoms and work capacity. Disability is a legal term, instead of medical term, which means that in addition to the diagnosis, to receive governmental support, the impact of the disease in the patient’s capacity to engage in work-related activities is the most important variable. The SSA has a list of impairments that work as guidelines to recognize the disability resultant from determined condition’s severity.

Only after the evaluation of the individual’s medical condition according to the social security’s listing can a person be considered disabled. The listing is not focused on pulmonary hypertension, but on the right side of the heart that is secondary to chronic pulmonary vascular hypertension, which needs to be proven irreversible. Physicians can help patients with pulmonary hypertension and disability seek for support and fill the documentation with notes about the patient’s capacity to work. But it is the patient’s responsibility to follow through on the process to apply for disability benefits.

This is a long process, filled with forms and questionnaires and many patients are denied benefits the first time they apply for it. In addition to the support of a physician, an attorney can also accelerate and simplify the process. In addition to social security, there are also organizations and foundations focused on providing support to patients who suffer from pulmonary hypertension, such as the Pulmonary Hypertension Association (PHA), or who struggle with disability like the National Organization on Disability.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.


A Conversation With Rare Disease Advocates