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ALPHA-1 is coming to town and Harrison Silverdale’s BB has them!

Alpha-1 is coming to town!  Silverdale to be exact – in the Rose Room at Harrison Silverdale to be more exact – 1:00pm to 3:00pm and we are all excited.

Mark Wednesday, 21 September 2011 for Better Breather’s partnering with Alpha-1 and Free Testing for the Alpha-1, a genetic component of Emphysema (COPD)

“American Thoracic Society (ATS) Guidelines

ATS guidelines recommend testing a broad range of patients with lung conditions:1

All adults with symptomatic emphysema regardless of smoking history

All adults with symptomatic COPD regardless of smoking history

All adults with symptomatic asthma whose airflow obstruction is incompletely reversible after bronchodilator therapy

Asymptomatic patients with persistent obstruction on pulmonary function tests with identifiable risk factors (smoking, occupational exposure, etc.)

Consider testing of asymptomatic individuals with persistent airflow obstruction without risk factors (no smoking or no known occupational exposure, etc.)”

The speaker is Nancy Bartholomew, with Prolastin-C from Grifols Inc.

 

 

I have included this photo taken from ATS “Rare Lung Diseases” because seeing it broke my heart.  It shows a ‘mother and her baby poignantly illustrating the fact that young women can be the victim of rare lung diseases.”

If we do not test, we cannot know and could easily be misdiagnosed and medically treated for the wrong condition.

… taken from American Thoracic Society (ATS) online “Some of the most exciting discoveries in pulmonary medicine have come from studying rare diseases. Insights gained from uncommon lung diseases often shed light on more common lung diseases…”  http://www.thoracic.org/education/breathing-in-america/index.php

Web sites of interest

National Institutes of Health Rare Diseases Clinical Research Network

www.rarediseasesnetwork.org

Orphanet  – About Rare Diseases

www.orpha.net/consor/cgi-bin/Education_AboutRareDiseases.php?Ing=EN

LAM Foundation

www.thelamfoundation.org

Hermansky-Pudlak Syndrome Network

www.hermansky-pudlak.org

Tuberous Sclerosis Alliance

www.tsalliance.org

 

Look for a table and chairs set up and friendly Harrison folks…Joyce is the RRT Harrison volunteer Better Breathers liaison…we are lucky to have her.

Rose Room – Harrison Silverdale

1800 NW Myhre Road – Silverdale, WA 98383

Better Breathers Support Group

“Our Better Breathers support group encompasses community members and their caregivers who live with chronic respiratory disease and lung disease. Better Breathers is designed to provide support, education, networking, and tools to improve the daily lives of those living with these health conditions.

We welcome any community member with asthma, emphysema, chronic bronchitis, sarcoidosis, asbestosis, pulmonary hypertension, pulmonary fibrosis and the many more lung diseases affecting our population, pediatric or adult.

Please email or call if you will need assistance with parking at the meeting.”

Contact: Pamela O’Flynn   – 360-744-6687 – respiratorycare@harrisonmedical.org

 

If anyone needs a ride, contact me.

Thanks for reading… Sharon O’Hara

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