PHinding Your Hope A Four Day Breakdown of PHA’s 2018 International Conference

PHinding Your Hope: A Four Day Breakdown of PHA’s 2018 International Conference

07.16.2018
judith_image.png

PHA Canada Ambassador and Fondation HTAPQ Board Member, Judith Moatti, shares some of her experience attending the 2018 PHA International Conference. Judith Moatti lives in Montreal, Québec. She was first diagnosed with Pulmonary Arterial Hypertension (PAH) in 2009, and has since become a PAH-Spokesperson, a support group leader for patients living or affected by PH in her region, as well as a patient representative for HTAPQ. In July of 2018, Judith also became a PHA Canada Ambassador.

Disclaimer: The views and opinions expressed in this article are those of the author and do not necessarily reflect the official policy or position of PHA Canada.

 


The Pulmonary Hypertension Association (PHA) hosted their 2018 International PH Conference and Scientific Sessions in Orlando, Florida from June 29th to July 1st. The theme for the conference was “PHinding Your Hope” and that is exactly what I left with. So many speakers gave us hope during the four-day event. I made so many new connections with people that I know through social media and it was very special to meet them in person. I’m excited to share with you some details from this wonderful experience.

Thursday, June 28

36486295_2029119093773162_119650925508820992_o.jpgWe started off the conference with the International Leader’s Summit. All of the participants represented various PH associations and foundations from over 30 countries around the world! Canada was very well represented: PHA Canada representatives Jamie Myrah, Nicole Dempsey, and Beth Slaunwhite were there. Fondation HTAPQ representatives Renée Levaque and myself were there, along with PH nurses Jessica Pinto and Lyda Lesenko. China, Serbia, and PHA Europe spoke about research and what their associations do for PH patients in their countries. The Latin American representatives shared some of their experiences advocating in their part of the world, and PHA taught us about strategic planning within the non-profit sector.

In the evening, PHA Canada managed to get all the Canadian participants together, including some Ambassadors and my Montreal nurses, Jessica Pinto and Lyda Lesenko (pictured here, on the right). We had some entrées and drinks, and got to know each other better. It was awesome to see how many Canadians are active in the PH community!

Friday, June 29

36386238_997718340409389_6416091677437460480_o.jpgAt the opening lunch, keynote speakers Nazera Wright and Elvis Medrano shared their stories of living with PAH and CTEPH, respectively. The overall presentation gave the audience a vivid sense of hope. Elvis was a full-time boxer when he eventually started to notice his shortness of breath. After a flurry of medical tests, the doctors eventually diagnosed him with having PH. He had a couple of surgeries to try and help relieve the symptoms. When he finally started to feel better, he went back to the ring and now trains an incredible six days a week!

Then came my first session: I learned some Tips and Tricks for Conserving Your Energy on an every day basis. The panel was excellent at explaining why and how we should watch our energy levels and feel comfortable delegating tasks when we’re feeling tired.

Then, I attended a session on the Emotional Challenges of Surviving with PH. The key message was to not hold on to survivor’s guilt; let it go and remind yourself that you’re still here for a purpose.

The session PHinding Your Hope Through Advocacy was given by PH patients, support group leaders, a caregiver, and PHA’s Senior Director of Advocacy and Treatment Access. I realized during this workshop that I do find a lot of hope through the advocacy I do and that I should keep going because it helps others as well.

Saturday, June 30

I started day three with a session on Women and PH: Working Through Intimacy Obstacles. The panel consisted of two PH patients and a nurse. They shared their personal stories and did an incredible job creating a safe space for the audience to also share thoughts and ask questions. They delved into how communication is the key to success in navigating intimate relationships.

Then, I had the pleasure of attending a support group meeting called Continuing Your Journey: for those diagnosed eight years or more. We introduced ourselves, shared our stories, and talked about accepting our situation for what it is. We learned a lot during this group—it was nice to see how many long-term survivors were present and it gave me hope that, maybe, I will survive for much longer than I had imagined. That afternoon I did an interview for the famous PHAware podcast with Steve Van Wormer.

My last session was Managing Side Effects of PH Medications. They explained the most common side effects that come with some of the medications, such as Flolan®, Veletri® (Caripul), Iloprost®, Orenitam®, Remodulin®, Tyvaso®, and Uptravi®. They also gave us some strategies to manage these side effects, with the main message being to talk about it with your specialists.

This conference was an amazing experience. I learned so much and left with so many new PHriends. Thank you to PHA for organizing such a great event and for giving us hope for the future of PH.

Recent News

Subscribe

Get the latest on PH treatments, community events and more when you subscribe to our newsletter

ImagineCan_Accreditation_Trustmark_ENGFR_WHT-FNL_white.png