OUR JOURNEYS

2006 Conference Story

Amanda DaSilva

Sunday, June 25, 2006

My sister was diagnosed in 1998 with PH. It took a long time to find reliable resources and when we stumbled across PHA, it was as if we found the light at the end of the tunnel. The first conference we attended was in California in 2002. I didn’t know what to expect and was quite overwhelmed with all the knowledge provided. This year was a much different experience for me. Not only did I learn so many new and exciting things, I met many new faces and friends. PHA has helped me to better understand PH and has given me the needed support to be there for my sister.

One of my favorite lectures was Advocacy and Awareness given by Gavin Lindberg and Katie Kroner. I have been wanting to get involved on a more political path with promoting PH awareness and am confident I can now do that. This lecture was quite informative and anyone can become proactive in getting the word across to Washington. PHA has also developed an excellent resource tool to aid us in the process of starting advocacy efforts with our own state’s legislators. We have come a long way. Please check this tool out on the web. Remember one small step forward, is one step closer to a cure!

Another great lecture was on Fundraising. The panel offered great ideas for us to work from. A few months ago my sister took over the North NJ support group and we have just begun working on our 1st fundraiser. A special Thank you to Debbie Castro who has been a tremendous help through the process. Debbie always has a smile on her face and is willing to help in any way she can – you just need to ask!

The medical led sessions were amazing as well. One lecture I found to be very intriguing was regarding the Associated Conditions of PH, including sleep apnea, thyroid disease, COPD and ILD (interstitial lung disease). It pertained to me since my sister had been diagnosed with thyroid problems and sleep apnea after her initial PH diagnosis. This lecture helped to put more pieces of the PH puzzle together. The panel was very knowledgable and helped us to understand the correlation between the two. Other medical sessions were very exciting in that new drugs are currently in the clinical trial phase. In fact, one is currently awaiting FDA approval. To think when my sister was initially diagnosed, there were only 2 drug choices. Now with the ongoing research efforts, we have 5 different drug therapies available as well as combination therapies.

The patient led support groups were fantastic. I was able to participate and speak to patients and family members. That is an important part at conference. In fact, we even met people from Canada and a patient from Israel! We are so lucky to have such a wonderful community of patients, families, friends and physicians. The atmosphere is always very warm and caring. You always feel welcome to participate.

All of the staff at PHA were extremely helpful and PHA has outdone themselves this year with a superior conference. Who knew it could keep getting better! Thank you PHA for a job well done. Your support is truly appreciated!

Amanda DaSilva (sister of Melanie Jae Gertcher – PH patient)

 

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.