Saturday, November 22, 2014

Get Support From PHA's Transplant Email Group

Lung or heart-lung transplant is a treatment option reserved for patients who are not improving on medical therapies. While transplantation can prolong survival, improve quality of life and offer a potential cure for pulmonary hypertension (PH), it also carries risk of significant complications and many factors need to be considered before going forward.

PHA's Transplant email group is a private forum where you can openly discuss your questions about and experiences with transplantation. We welcome PH patients considering and awaiting transplant; caregivers with questions about the transplant experience; transplant recipients interested in sharing their stories and networking with others; and any other PH community members interested in transplant.

Learn more | Join the group


Friday, November 21, 2014

Enter To Win Complimentary Conference Registration

PHA needs your help! Each International PH Conference is represented by a unique theme. PHA looks to our community members for ideas for an inspiring theme that conveys our progress as a community in the fight against this awful disease and our continued efforts toward the ultimate goal of finding a cure. The winner of the Conference Theme Contest will receive a complimentary registration to PHA's 2016 International PH Conference in Dallas, Texas.

Submissions are due by Dec. 10, 2014.

Learn more

Wednesday, November 19, 2014

November is COPD Awareness Month

November is also COPD (chronic obstructive pulmonary disease) Awareness Month! Watch this online seminar video to learn about pulmonary hypertension in the setting of lung diseases, particularly COPD. Dr. Sonja Bartolome, a pulmonologist from the University of Texas – Southwestern, provides an overview of PH symptoms in patients with respiratory disease, appropriate testing for COPD patients with suspected PH, and treatments for patients with lung disease-associated PH.

https://phassociation.org/Classroom/Recording/PHPlus/PHInCOPD
Learn more

Tuesday, November 18, 2014

Welcome to CTEPH Awareness Day!



Welcome to the first-ever CTEPH Awareness Day! Chronic thromboembolic pulmonary hypertension (CTEPH) is a form of pulmonary hypertension caused by blood clots in the lungs (pulmonary embolism). Educate yourself and your community about CTEPH.
Learn more

Monday, November 17, 2014

Diseases Associated with Pulmonary Hypertension

Many pulmonary hypertension patients are diagnosed with PH in association with one or more related conditions. Research shows that up to 30 percent of scleroderma patients, 20-40 percent of sickle cell patients and one out of every 200 HIV patients develop at least mild PH.

Other conditions commonly associated with PH include mixed connective-tissue disease, congenital heart disease (CHD), chronic obstructive pulmonary disease (COPD), hereditary hemorrhagic telangiectasia (HHT), sleep apnea, liver disease and lupus. PH has also been linked to the use of certain drugs and toxins, including fenfluramine, dexfenfluramine and methamphetamines.

PH Types:
PVOD: Pulmonary Veno-Occlusive Disease 
Familial PAH
CTEPH

Below are links to just some of the commonly associated conditions and diseases.
If you’re juggling multiple conditions and the symptoms, specialists and medications that accompany each, you’re not alone. Many patients and caregivers in our community understand the uncertainty and stress that go hand-in-hand with a diagnosis of PH related to another disease. Whether you’re living with PH plus scleroderma, PH plus liver disease or PH plus another condition, you can share information and connect with people who understand.

PH Plus Community:
         Facebook
         Google Groups
         Blog

Transplant Community:
         Google Groups 
 
Read More

Sunday, November 16, 2014

Two Out of Five Adults Are Caregivers

Are you a caregiver for someone in your family? If not, you probably know someone who is a caregiver. According to the Pew Research Center, two out of five adults are caregivers for a spouse, child, parent, sibling or other relative.


Check out PHA’s resources for PH caregivers

Saturday, November 15, 2014

Marathoner Roseanne Huber Credits Early Detection

Roseanne Huber received a devastating diagnosis that nearly brought her life to a crashing halt. Luckily, early diagnosis of exercise-induced pulmonary hypertension by Dr. Pasha Sarraf and referral to an expert center halted the progression of this devastating disease. Thanks to this early diagnosis, she has been able to resume her active lifestyle and runs races on behalf of PHA.

Read more