Saturday, June 29, 2013

Due to Popular Demand

PHA’s Art from the Heart contest is now open to all ages! Do you dream of getting your artwork published? PHA needs you and your artwork to help raise awareness for pulmonary hypertension. Enter your drawn pictures, photographs, collages or digital creations to PHA’s Art from the Heart design contest and use your creativity to help find a cure.

Learn more

Wednesday, June 26, 2013

Longtime PHA member and enthusiast Diego Gil came all the way from Colombia this month to visit PHA

Longtime PHA member and enthusiast Diego Gil came all the way from Colombia this month to visit PHA headquarters and several PHA events in order to pick up some new ideas for his own young association, the Asociación Colombiana de Hipertensión Pulmonar (ACHPA). ACHPA is only one year old, and consists of a support group in Cali, led by long-time support group leader Diego, a support group in Medellín, led by Karen Narvaez, and a group in Bogotá, led by the president of the association, Francisco Castellanos.
At PHA’s headquarters, Diego had one-on-one meetings with each of the departments of PHA to learn about PHA’s methods in special events/fundraising, corporate and foundation funding, educational programing for patients and medical professionals, support groups and psychosocial health, and medical access advocacy. Diego also spent some time learning about the “Sometimes it’s PH” early diagnosis campaign, which he hopes to develop in Colombia and which is close to his heart, as he is doing well with his PH after 23 years due to his own early diagnosis at age eight.
Diego was also lucky enough to be able to see several events that PHA puts on in the community. He started off his visit to the U.S. in New York City, where he participated in the O2 Breathe Walk at South Street Seaport and took a lot of pictures to share in fundraising brainstorming back in Colombia. Since the Colombian association has been hoping to hold a patient education forum, Diego also went to the Boston “On the Road” event June 8, where he participated in several sessions as well as an event for support group leaders and a Generation Hope get-together.
Back in Colombia, Diego hopes to take what he learned back to other interested South American associations.
For a list of associations around the world, visit www.PHAssociation.org/PHInternational/PHAssociationsWorldwide
To read Diego’s journey with PH, visit www.PHAssociation.org/Community/OurJourneys/DiegoGil

5 Valuable Reasons Every Caregiver Should Attend Support Group Meetings

According to many support group leaders, caregivers have five good reasons to attend support group meetings:
 

1. To Offer Support

Stephanie Layer, a PH patient and Minnesota support group leader, says, “I feel that it is so important for a caregiver to attend support group meetings to show support for the patient. The love and support that caregivers give is the extra strength that helps the patients move forward.”

Living with a chronic illness can often be as much of a mental challenge as it is a physical one. Accompanying a spouse to a support group meeting shows you consider being part of the PH community important. Caregivers who show such understanding and empathy are invaluable.


Read the rest of the reasons

Tuesday, June 25, 2013

Sleep Well — Feel Better

We haven't done a clinical trial yet about an apple a day keeping the doctor away, but we know that a little sleep can go along way. Everyone benefits from a good night's sleep, but it's essential for those with PH. Check out the tips below to help you get your Zzzzs. Maintain good sleep hygiene (which means habits).
  • Stick to a regular schedule during the day. Try to wake up and go to bed at the same time each day.    
  • Resist the urge to sleep in even if you didn't sleep well the night before.
  • Don't exercise within three hours of going to bed.
  • Try not to nap. If you're really sleepy, only take one nap and do it before 3:00 p.m.
  • Create a bedtime routine you can go through for about 30 minutes before going to bed, such as reading, listening to music, etc.
  • read more...

Question of the Week


Sunday, June 23, 2013

Study to Help Detect PAH in Systematic Sclerosis

Read a study about the DETECT algorithm for PAH detection in systemic sclerosis. This algorithm is a sensitive, non-invasive tool that minimizes missed diagnoses, identifies milder disease and addresses resource usage.

Friday, June 21, 2013

Pulmonary Hypertension Mixing With Hereditary Hemorrhagic Telangiectasia


“Living with these two diseases is a challenge. I am still employed full time…I’m still learning to accept my ‘bad days’ and to enjoy my ‘good days.’” For Hereditary Hemorrhagic Telangiectasia (HHT) Awareness Month learn more about the complexity of having both HHT and pulmonary hypertension and read a patient’s story.

Thursday, June 20, 2013

Faces of PH: Perry Mamigonian

“It was here that I had the opportunity to meet other pulmonary hypertension patients for the first time. There were so many kind people that reached out to me with advice and re-assurance.”

-- Perry Mamigonian about his experience at Conference 2010.
 

 Read Perry’s story

Patient Support is Just a Phone Call Away

Patients: Do you ever feel isolated? There’s nothing wrong with wanting to talk to someone who understands you. Join PHA’s monthly patient call support group facilitated by fellow patient Carol Bowling. It doesn’t matter where you live or how long you’ve been diagnosed for, what matters is that you want to talk to someone you can relate to. Connect with Carol and other PH patients on June 27, 2013, at 8:00 p.m. ET/5:00 p.m. PT by calling in toll-free for an hour of support and a sense of hope.

Register now

Wednesday, June 19, 2013

2014 Conference Save the Date!



SAVE THE DATE! PHA’s 2014 International PH Conference and Scientific Sessions will take place June 20 – 21, 2014, in Indianapolis, Ind. Conference is the largest meeting of PH patients, family members, friends and PH-treating medical professionals in the world – and we hope to see you there!

Make a Differnce With Congress

 


“Never doubt how important your voices are. We need to hear from you! Some Members of Congress won’t sign on to a bill until they’ve heard from someone in their state or district.”

-Sara Mabry, Legislative Assistant to Sen. Bob Casey (D-PA)




 

Tuesday, June 18, 2013

Medical Professionals: Upcoming Chronic Thromboembolic Pulmonary Hypertension (CTEPH) Webinar

Richard Channick, MD will discuss the importance of looking for and understanding chronic thromboembolic pulmonary hypertension (CTEPH). CTEPH occurs when blood clots block or narrow the blood vessels in the lungs.  A potentially surgically reversible form of pulmonary hypertension, it is essential to include screening for CTEPH in the work up of newly diagnosed pulmonary hypertension patients.  Join us June 26th to learn more about diagnosing and treating this disease.
 Learning Objectives:
At the conclusion of this live activity, attendees will be able to:
Describe the natural history of acute pulmonary embolism
Propose a treatment approach for a patient with chronic thromboembolic pulmonary hypertension.
CME Information
 This live activity has been planned and implemented in accordance with the Essential Areas and Policies of the Accreditation Council for Continuing Medical Education Council for Continuing Medical Education (ACCME) through the joint sponsorship of Washington University School of Medicine, Continuing Medical Education and the Pulmonary Hypertension Association. 

Washington University is accredited by the ACCME to provide continuing medical education for physicians.

Washington University designates this live educational activity for a maximum of 1.0 AMA PRA Category 1 CreditsTM. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

Question of the Week


Free Survival Guides Flying Out the Door

FREE copies of PHA's Pulmonary Hypertension: A Patient's Survival Guide are flying out the door! Have you joined or renewed your PHA membership to receive your free Survival Guide yet? Hurry while supplies last!

Get your free Survival Guide by joining or renewing your membership

Monday, June 17, 2013

Family Session this Saturday at Neonatal and Childhood Pulmonary Vascular Disease Conference

PHA is partnering with University of California, San Francisco, (UCSF) for the Neonatal & Childhood Pulmonary Vascular Disease Conference! The conference will consist of medically led sessions targeted toward medical professionals, as well as a special Family Session for patients and caregivers on June 22 to discuss issues pertinent to families living with pulmonary hypertension.

This special family-centered session will offer families the opportunity to interact with other families in a smaller group setting. It will consist of three “journeys” presentations from parents, an open discussion time for all to share, and a panel discussion with participation from Steve Van Wormer, PHA Board member and caregiver.

Register now

Ironman to Run for Pulmonary Hypertension

PHA Europe has teamed up with Ironman Triathlon to raise awareness of pulmonary hypertension at their European events. This is the first time that Ironman has teamed up with a charity in Europe!

Several of these unique Ironman athletes will be running for PHA Europe and the local PH associations wearing special jerseys to spread the word. PHA Europe and other member associations will also be out tabling during pre-event and race activities. Look out for them at the Ironman Triathlons and half-Ironman Triathlons in Austria, France, Germany, Norway, Spain and Switzerland from May to July.

Learn more on PHA Europe's website

Saturday, June 15, 2013

PHA Welcomes HAPCHI Chile to the World PH Community

Welcome, HAPCHI to the growing list of PH associations around the world! HAPCHI is a patient association in Chile whose work ranges from support to advocacy. They help pulmonary hypertension patients all across Chile to have access to medical care and treatment, to get moral support when needed, and to believe that there’s hope.

For World PH Day this May, they hosted a march in Santiago to fight for access to and coverage of PH treatment under AUGE, a Chilean healthcare access plan for certain diseases.

You can connect with HAPCHI on Facebook or by emailing contactohapchi@gmail.com.

Friday, June 14, 2013

When Scleroderma Meets Pulmonary Hypertension

“Scleroderma and PH is not my identity. I’m still a person inside.”
--Tammy Gilbert

Watch the Pulmonary Hypertension and Scleroderma video and hear Gilbert’s story to learn more about the complexity of having both PH & scleroderma.

Thursday, June 13, 2013

Lungs for Kids are Hard to Come By

Ten-year-old cystic fibrosis patient Sarah Murnaghan received transplanted adult lungs Wednesday after her parents went to the courts. A recent NPR story covers some of the issues that families like the Murnaghans face. Listen to NPR story | Read latest on their case

More than 118,000 Americans, including pulmonary hypertension patients, are waiting for life-saving organ transplants. A single donor can save up to eight lives. Are you and your family members organ donors? Learn more and encourage organ donation | Access PHA’s transplant resources

Happy World Blood Donor Day 2013

According to the World Health Organization: "World Blood Donor Day, celebrated on 14 June every year, serves to raise awareness of the need for safe blood and blood products and to thank voluntary unpaid blood donors for their life-saving gifts of blood. With the slogan "Give the gift of life: donate blood", this year’s campaign, the 10th anniversary of World Blood Donor Day, will focus on the value of donated blood to the patient, not only in saving life, but also in helping people live longer and more productive lives."  Learn more ...

Question of the Week

Tell us what you think and click to learn more about PHA's resources for coping with PH.

Wednesday, June 12, 2013

Estate Dramas: Even Celebrities Crave Clarity


In estate planning, there is no such thing as too clear. Whether you have an entire team of advisers to manage a net worth with many zeroes or you're working with your attorney to create a basic will, clarity counts.

Healthcare on the Go

There are a lot of mobile apps out there claiming to help you with your health. Unfortunately, many do not live up to their claims, and some can even harm you. The American Thoracic Society took the time to review some health apps that are worth the download, including an app for locating medical needs when traveling, a medication guide, a food allergen tester and a heart monitor.

Read the mobile apps review

Tuesday, June 11, 2013

Are you attending an upcoming monthly support call?



Each month PHA offers Patient, Caregiver and Parent Telephone Support Groups.  You may participate by calling in toll-free to connect, learn and share strategies of living with PH.  Calls lasts one hour; we welcome you to join us for as long as you like.


"It is not your journey. It is our journey." – from PHA on the Road, Boston.
PH Caregivers – join us next Wednesday to find support, advice and tips from other PH caregivers sharing this journey.
June 19, 2013; 1:30 pm ET/10:30 am PT
 
Parents of PH Kids – planning your summer travel? Join us next week to get tips and advice from other parents!
June 17, 2013; 11:00 pm ET/8:00 pm PT
&/or
June 19, 2013; 8:00 pm ET/5:00 pm PT
 
This group is open to all patients, whether they are newly diagnosed or have PH for many years. Carol Bowling, patient facilitator will welcome all on the call and give brief updates. At least 45 minutes is dedicated to facilitated conversation, which includes many questions and stories from patients on their diagnosis.
June 27, 8:00 p.m. ET/5:00 p.m. PT