AdvocacyRSS2 days ago
Living with pulmonary hypertension (a serious lung disease) can be emotionally overwhelming after diagnosis, bringing fear, stress, and anxiety alongside physical symptoms. A new article suggests that identifying and focusing on your 'good days' — times when symptoms are manageable — can help reduce the emotional burden of the disease. This mental health approach is being highlighted during May's Mental Health Awareness Month to help patients and caregivers cope better.
WHY IT MATTERSPulmonary hypertension patients often struggle with mental health alongside their physical symptoms, and this article offers a practical coping strategy that can be implemented immediately without waiting for medical appointments.
PolicyRSS3 days ago
Prices for everyday items and healthcare are going up faster than they were a few months ago. The government reported that costs rose 3.8% in April compared to a year ago. For people with chronic illnesses like pulmonary hypertension, these rising costs make it even harder to afford medical care and medicines.
WHY IT MATTERSPeople with chronic rare diseases already spend significant money on medications and treatments, so inflation directly reduces their ability to afford necessary care and increases financial hardship.
AdvocacyRSSMay 15
Camp Bon Coeur in Louisiana is a specially designed camp for children with heart conditions, including pulmonary hypertension. These medically supported camps give kids with serious heart problems a chance to build confidence, make friends with others who understand their condition, and receive proper medical care while having fun. The article highlights how important these camps are for children managing chronic heart diseases.
WHY IT MATTERSChildren with pulmonary hypertension often feel isolated by their condition—these specialized camps provide peer support from other kids with the same disease while ensuring medical staff are on-site to manage their care safely.
ResearchRSSMay 15
A company called Cereno Scientific is working with PHA Europe & Global to design new pulmonary hypertension medicines in a way that includes patient input. Instead of just scientists deciding how to develop drugs, patients with pulmonary hypertension will have a say in the process from start to finish. This partnership means the final medications may work better for the people who actually need them.
WHY IT MATTERSPatients with pulmonary hypertension will now have direct input into how new treatments are designed, potentially resulting in drugs that better address their real-world needs and concerns.
AdvocacyRSSMay 14
A patient shares their experience of losing privacy while living with a chronic illness, describing a moment when over 10 doctors and medical students gathered around their hospital bed to discuss their case without asking permission. The article highlights how people with long-term health conditions often face unexpected invasions of privacy during medical care, even in teaching hospitals where students need to learn.
WHY IT MATTERSPatients with chronic illnesses like pulmonary hypertension need to know they have the right to set boundaries about who can be present during medical exams and discussions, and can advocate for their privacy even in teaching hospitals.
AdvocacyRSSMay 1
World Pulmonary Hypertension Day is happening on May 5th, with a focus on clinical research this year. Pulmonary hypertension is a condition where blood pressure gets too high in the blood vessels of the lungs, making it hard for the heart to pump blood. Advocates and organizations like PHA Europe are using this day to raise awareness and help people living with this condition understand how clinical trials might help them.
WHY IT MATTERSThis awareness day highlights how clinical trials are advancing treatment options for pulmonary hypertension patients, giving them access to potentially new therapies beyond current standard treatments.
ResearchRSSApr 29
Corvista Health and Mayo Clinic are working together to test a new blood test that could help doctors diagnose pulmonary hypertension (a serious lung disease where blood pressure in the lungs gets too high) without invasive procedures. The test aims to make it easier to identify who has the disease, figure out how severe it is, and decide who needs to see a specialist. This collaboration is an important step forward in developing better diagnostic tools for this condition.
WHY IT MATTERSIf successful, this non-invasive test could help patients with suspected pulmonary hypertension get diagnosed faster and more accurately, potentially avoiding unnecessary invasive procedures like heart catheterization while ensuring those who need specialist care are properly referred.
ResearchRSSApr 24
A new study found that babies born early who develop a lung condition called bronchopulmonary dysplasia (BPD) often need medications to treat high blood pressure in their lungs (pulmonary hypertension). However, as these children grow into toddlers around age 2, many of them stop needing these medications. This suggests that the lung condition may improve naturally as kids get older.
WHY IT MATTERSIf your child with BPD and pulmonary hypertension is on PH medications, this research suggests their doctor may be able to reduce or stop treatment as they grow, potentially reducing long-term medication burden and side effects.