PH Awareness 2015

By Kiara Tatum

I can’t believe another year has passed by, and PH Awareness Month is here once again.  During the month of November, there are many events, fundraisers, support group meetings, advocacy action, and other activities to spread PH awareness.  This is also a great time for young adults diagnosed with PH to spread as much PH awareness as we can during the month.  I know it can be difficult getting involved in attending events or hosting a fundraiser, but I’m going to share some great ways to spread PH awareness using social media.  

One social media event that goes on until November 30 is #Heart2CurePH.  It's simply printing the "Please Co-Sponsor H.R. 3520 sign" and taking a selfie or a usie with friends and family and posting it on your Facebook or Twitter page with the #Heart2CurePH.  Don't forget to post on your Members of Congress pages as well to see if they have the #Heart2CurePH by sponsoring the Pulmonary Hypertension Diagnosis and Research Act.  For more information go to Heart2CurePH Photo Campaign on Facebook.  

#Heart2CurePH Campaign is part of the 2015 National PH Advocacy Day on Thursday, November 19.  There are three ways to get involved including the #Heart2CurePH, giving your Members of Congress a call, and visiting your local legislature office.  Find out more information of Periwinkle For A Cure: National Advocacy Day here.  We are coloring the world periwinkle this month.  So change your profile pics and cover pages on Facebook to PH Awareness themes.  Can find them on the Pulmonary Hypertension Association Facebook page.

Now ladies, and the fellas too, this one is a good one.  Get out your periwinkle color nail polish and paint your nails.  It's time for the #ManiUpForACure Campaign.  Take a pic of your nails and post on social media with the #ManiUpForACure.  No periwinkle nail polish, no problem.  When you donate $20 or more to PHAware, you will be sent a bottle of nail polish, so that you can participate in this campaign.

Now another idea which is just so inspiring and amazing, I can't wait to do create mine, is record a note card story.  It'll allow you to share your PH journey to others on social media.  You can post on YouTube Channel and/or your Facebook Page.  It's a great way to share your story and spread PH awareness. Check out Shannon O'donnell's PH story.

These are just a few ways you can get involved in spreading PH Awareness to family, friends, and your community.  Do one, two or try them all.  For more details and other ideas you can always visit PH Association Awareness page. Do something this month to spread PH Awareness!

GenHope Spotlight: Syrena Arevalo

By: Tadesse Wondwosen, PHA Intern
The younger generation of PH patients continue to overcome hurdles and make strides towards improving their lives with PH. Syrena Arevalo shares her story on embracing her PH and using what motives her as fuel.

PHA: Please state your name and where you’re from? 

Syrena Arevalo: "My name is Syrena Arevalo and I'm a proud Tucsonan! I graduated from the University of Arizona in 2013 with a double Bachelor's Degree in History and Mexican American Studies."

PHA: When were you diagnosed with PH?

Syrena: "I was diagnosed with Pulmonary Hypertension in August of 2012 after being rushed to the Emergency Room with Right Side Heart Failure. At the time, I was at the beginning of my senior year in college and had so many plans lined up for the year. But as we all know, we never know what obstacles will be placed in our path. This was a time in my life that I wanted to focus on my career and what I wanted to do with my life. I wasn't ready to focus on the unknown."

PHA: What are some of the challenges (if any) that you face when keeping up with your PH?

Syrena: "When I went back to school, many things changed. Not only did I have to try to focus on my studies I had to be aware of doctor’s appointments, medications, and how my breathing was doing while going from building to building. There were times when I felt like I really wanted to give up my dreams and my studies because it was just so overwhelming. I felt very depressed for a very long time. But there was a part of me that didn't allow myself to give up because I wasn't doing this just for myself but for everyone that was there during the most trying period of my young life."

PHA: I hear that you are an artist and in a music band? Please tell me more about that?

Syrena: "Art and Music has always been a part of my life. I’ve been a musician for about 15 years and play in a local Mariachi group. It has always been a great escape for me and allowed me to express myself while bringing joy to those watching and listening. I have met so many amazing people and have had to opportunity to perform in many great venues. My greatest accomplishment occurred after I was diagnosed. November of 2012, only three months after diagnoses, I entered a vocal competition in Las Cruces, New Mexico. I went toe to toe with so many great performers and singers in the region who attended the Mariachi conference that year. One of them would eventually become my boyfriend. I felt so much support at the competition that it was overwhelming. I had brought with me periwinkle ribbons and info cards with me and those who competed as well as the Mariachis who backed me up were more than willing to wear them. Even though it was a tiny gesture, it meant the world to me. In the end, I won the competition and received a scholarship that would pay for a portion of my last semester of college."

                                                                           

"After my diagnoses, I took a semester off of school to adjust to the side effects and site changes that Remodulin had on me. During this time, I submerged myself in painting. Before this, I would often doodle and take art classes in High school here and there, but nothing really serious. It allowed me to put down on canvas what I was feeling and what I wanted for my future. I became better and better at acrylic painting and recently, I was invited to show my work at a local art show. I'm hoping to do more shows in the future and keep doing it just for fun!"

PHA: Syrena what would you say keeps you motivated in not having your PH define you?

Syrena: "Life motivates me. Why should I let this disease define who I am? There are so many things that I still want to do. To travel, start a family, begin a career. During these last two years, I've had so many people tell me that they are praying for me and my family members, many people I didn't even know. My friends and family have been the greatest cheerleaders that I could have asked for. They have motivated me to keep up with my health even though it can be difficult sometimes. Not giving up is the least I can do for them."

PHA: Lastly, what would your advice be in how the younger generation can live with PH and still be able to live normal lives?

Syrena: "I would be lying if I told you that it's going to be easy because it's not. But we all have to remember that we have PH, but PH doesn't have us. We have such a great support group of amazing young men and women who know just what we are going through within Generation Hope as well as in other communities on the web or in your local communities. Seek them if you have questions or concerns. We are all in this fight together.  Lastly, continue to do what you love to do.  It can make the tough times a little easier."      

PHight for PH......Karate Style!

By Tadesse Wondwosen, PHA Intern

    For our younger generation, living with Pulmonary Hypertension can present many challenges. Learning how to meet those challenges can be a drawn-out process. Faced with the normality of being young and aspiring, the younger PH population must also come to terms with being able to cope and manage their condition as well. We spoke with Shannon O’Donnell, an ambitious teen, as she shares her experience with fighting PH and living life to the fullest.

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PHA: Could you please introduce yourself and briefly explain your connection with PH to our readers?

Shannon O' Donnell: "Hi everyone my name is Shannon O’Donnell and I’m a pulmonary hypertension patient. I’m nineteen and I’ve had PH for thirteen years. I’m on the crono five pump for remodulin and also many oral medications and oxygen at night. I’m currently a karate teacher for mentally challenged children and will be competing in my first tournament in two weeks!"

 PHA: From my understanding, you are still in college? What school do you attend and what is your focus?

Shannon: "I attend Bunker Hill Community College in Charlestown, Mass. My major is pediatric radiology and I’m currently in the prerequisite stage of the program."

PHA: Being in college, what are some of the challenges (if any) that you face when keeping up with your PH?

Shannon: "Well I’ve had some issues with some of my professors who don’t always understand why I miss class or leave early, even if I tell them ahead of time."

 PHA: Being away from home, is there still a network of support between your family and friends?

Shannon: "My school doesn’t have dorms so I still have the luxury of living at home with my family who are constantly caring for me. Most of my friends have gone off to further schools; however I still received their love and support as well."

 PHA: Shannon, what would you say keeps you motivated in not having your PH define you?

Shannon: "Darren Criss (Blaine from glee) has this saying “There is nothing more bad-ass than being yourself.” And there’s also a lyric from Demi Lovato’s song Fire Starter, “I'm a bad-ass jumping off the moving train I'm a Jane Bond, putting all them guys to shame I'm a wild card, and I'm gonna steal your game you better watch out.” I do what I want and listen to what my body tells me. I just try to be myself no matter what." 

                                                                 

PHA: And lastly- what would your advice be in how the younger generation can live with PH and still be able to live normal lives?

Shannon: "Listen to your body and live how you want while still respecting your parents. And it’s okay to be the smartest person in science class. Go to junior and senior prom don’t let PH run your live because you have one life to live so let it go and have fun."

Generation Hope #StillPHighting

by Generation Hope Advisory Board

November is a PH Awareness month, and many of you have been wearing awareness bracelets, t-shirts and hats, posting selfies, changing profile pics and names, and other things to bring awareness to PH. But we're still "PHighting", and we can't do it alone. We need help from Congress to join us in the "PHight".

Thursday, November 13th is National PH Advocacy Day. PH Association is hosting a Congressional Luncheon; however, if you're unable to attend, you can still get involved. Create a selfie-video and share it. Email your video to AngeliaD@phassociation.org, and it will be posted to the PHA's YouTube Channel. Share the video with your family and friends and encourage them to make their own videos. And don't forget to add #PHAware when you post your video.

Then on November 13, post your selfie-video to your senators' and representatives' Facebook pages. Check out the video that Generation Hope Advisory Board created:




For more details and a guided script for your selfie-video visit PHAssociation.org/stillphighting

Generation Hope Goes to Boston

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Posted by Colleen Brunetti

On June 8^th, PHA brought their education program “PHA on the Road” to Boston, MA. Doctors, patients, caregivers, and family members convened at a beautiful hotel on the Charles River. It was a day of education and networking, a time to make new friends, and a time to meet up with old.

The day started with pre-forum support groups where newly diagnosed, longer-term patients, parents, and caregivers could meet up specifically. I, along with Kiara Tatum, led the newly diagnosed group. I remember the early days of diagnosis…wondering how to find the right doctor, trying to have confidence in your treatment plan, the worrying and wondering that comes with a diagnosis like pulmonary hypertension. So many patients reached out to support us in those early days – it is a privilege to pay it forward and offer that support for others.

The opening session went over diagnosis, treatments, and long-term management of pulmonary hypertension. No matter how many times you attend these events, a refresher always helps, along with the very good chance that you will pick up one or two new things along the way. Break-out sessions throughout the day offered time to learn about more specific areas of interest, such as exercise and diet, congenital heart disease, and preparing for travel and emergencies.

Colleen with Jeannette Morrill

The highlight of the day’s events for me, as I’m sure for many others, was listening to Jeannette Morrill talk about her journey with PH.  Jeannette has been diagnosed for 37 years!  This is totally unheard of in the PH world - especially as her diagnosis came in 1976 prior to any real treatments being available.  Jeannette's story is one of perseverance and hope, brutally honest in the challenges, and full of celebration in the triumphs.  

Finally, the day wound to a close, ending on a high note, with an overview of clinical trials for new treatments, some perhaps not so promising, but several that may be set to offer new hope for patients.

As the conference wound down, Generation Hopers gathered in the hotel restaurant for our meet-up. We’ve had meet-ups like this a few times before, but it never ceases to amaze me, sitting there watching everyone interact. The connections that happen are nothing short of spectacular. PH can feel pretty isolating, but I could look across that circle and see another mom raising young children while she battles PH, and I know she “gets it”. Two other patients connect as they share news of their pending lung transplant evaluations. What’s it like to be in your 20s or 30s and staring down a full lung transplant? I don’t know. But they do. And when you face anything like this, you need each other.

By far the highlight was sitting in that circle, listening to each attendee talk about their hopes – what gives them hope, or what they have hope for. Hope that children will no longer know their mom as “sick”, hope for a favorable transplant experience, hope to have to use less oxygen, hope for new and better treatments… the hope that binds us together and spurs us forward. Thank goodness for moments like these.

Calling All GenHope!

The weather is not quite the spring weather that we expected on the Northeast region, but spring is definitely here.  This means that World Pulmonary Hypertension Day is just around the corner on May 5.  I’m calling all young adults to take action this year and participate in this worldwide event.

Pulmonary Hypertension can affect anyone.  It doesn’t care about your age, sex, race, or even your social class.  That’s why we need to show the world what PH really looks like on World PH Day.  PH Association is organizing an online awareness event via Twitter, Facebook, email, blogs, etc.  So all you have to do is share a photo of yourself with the World Pulmonary Hypertension Day logo and a message you want everyone to hear about the impact of PH in your life.   Share information about PH and your own experience with it for the Online Awareness Day Event.

Let’s put a real face to an invisible disease this year!

Sometimes It's PH!

Bringing PH Awareness Your Community

By Kiara Tatum

Doctors are taught in medical school that if they hear hoof beats, they look for a horse not a zebra.  Meaning if a patient is describing symptoms of shortness of breath, fatigue or other common symptoms, then doctors assume common ailments such as Asthma, Obesity or COPD.  However, we as Generation Hope PH patients know that sometimes it’s PH.  So it’s up to Generation Hope to spread the word about PH and since PH Awareness Month is around the corner in November, it’s time we take action.

 

With help from Yusetty Medina, Community Advocate Manager from Accredo, I set up an informational table at my local mall to hand PH pamphlets to crowds of people for PH Awareness Month.  The goal wasn’t to raise funds, but to raise awareness about Pulmonary Hypertension for early diagnosis.  I ordered the free pamphlets from PH Association and Yusetty brought informational brochures from Accredo.  There were also goodies to hand out: chocolate, candy and bottled water to key chains, PH Awareness bracelets, flashlights, pens, hand sanitizer and travel size Band-Aid holders.  Together we talked to many different people from the young to old about Pulmonary Hypertension.  This year, I plan to do the same, but with a little more help from my support group to have a bigger impact on the community.

Yusetty and Kiara at PH Awareness Event 2011

You can do it too.  It doesn’t take much time to organize an awareness event.  There have been a couple of Facebook events called “Show Us Your Stripes”, and that’s something that we can all do in November by posting pictures of ourselves, family, and friends wearing zebra stripes and posting pictures online and explaining to Facebook friends what the zebra stripes mean.  Another simple idea is setting up display boards for the month of November at your local community center, library, college campus, or wherever you can find a spot that will be seen by lots of people in your community.  You can also raise awareness through the media by telling your PH story with your local newspaper.  Additionally, if there is an event already planned in November, maybe you can have a table set up there about PH, such as a local school concert.  Or request an Awareness Month proclamation from your mayor and/or state governor.  There are other great ideas for you to get involved this PH Awareness month.  Check out PH Association at http://www.phassociation.org/AwarenessMonth2012 for more ideas.

I have said it before that the PH journey isn’t so smooth, but by each one of us spreading PH awareness to others, we can make a difference.  We can help others who may be experiencing symptoms of PH get the help and early diagnosis needed to stop the progression of PH.  Don’t let another November go by without doing something.  Take action!!!

Generation Hope After Dark 2012

By Brittany Riggins

Advisory Board Members

In 2006, I attended my first PHA International Conference in Minneapolis, MN.  I had only been diagnosed for about 9 months at that time.  While I had been attending my local support group meetings, I had yet to meet another patient even close to my age.  So at conference, I sought out the few other patients from across the country that were also in their 20's and affected by PH.   We bonded, spent a lot of the conference together and promised to keep in touch.  The thing that I couldn’t understand was that I had been continually told that pulmonary hypertension primarily affects women in their 20's and 30's.  So where were all the patients my age? Why weren’t they at the conference or the support group meetings?  Why wasn’t there some way we could all come together and help each other deal with this disease that was thrown at us at such a pivotal time in our lives?  Fortunately I wasn’t the only one seeing this gap in the PHA programming.  With the help of the wonderful staff at PHA, three other young adult patients and I were asked to be on the advocacy board for what would become Generation Hope in 2009.  And it was like we suddenly weren’t alone anymore.

Due to an unfortunate combination of pay cuts, long plane rides and general bad timing, I was unable to attend the previous International Conference in California.  It was the first conference that held sessions and programming just for the young adult group.  It broke my heart to be missing it, but after seeing all the photos from the Generation Hope After Dark mixer, I was so proud to have even had a small part in encouraging so many young people to come together at conference.  It was announced that the next conference would be in Orlando -- a much more reasonable trip from my home in Atlanta --, so all that was left was to wait two years.

As conference started up, I connected the names and photos I had seen so many times on the Generation Hope list serve and Facebook with the actual people.  I had done this in the past with friends from the PHA message boards, but it was so much more exciting this year.  We had a party to look forward to!  Generation Hope members were given metallic purple slap bracelets -- if you're in your 20's or 30's you remember what those are -- in their registration packets as their pass in, but by the end of Friday night you could see them shooting across the bar.  There was a chocolate fondue fountain, a selection of tiny delicious desserts, and even a specialty cocktail created just for the event.  The Generation Hope After Dark mixer was such a raving success that I never bothered to count how many patients attended, I barely took photos, and I didn’t get to bed until 2:00 am the next morning.  Seeing so many young patients from across the world in one place bonding and sharing stories was something I never thought I’d get to see.  There was easily 50 of us; all with the same concerns and hopes about life, love and fighting PH.  We had a presence and now a voice.  

The most surprising part of the After Dark event was our unexpected party crashers.  They came in the form of a high school aged mob.  A mob sounds like they had torches and pitchforks, but you know what I mean.  They were eager to try out the chocolate fondue fountain, or so I thought.  A lot of these kids have been battling PH a lot longer than some of us and will soon be joining us in Generation Hope.  While we were hesitant to let them in  -- do their parents know they’re going to be around a bunch of rowdy, drinking, 20 and 30 something --, in reality they are our future.  As much as we want to, none of us are going to be allowed to stay in Generation Hope forever.  Eventually, we will have to pass the torch onto this next group, who I feel like were elementary school age just a blink of the eye ago.  I look forward to the new energy and ideas they will bring with them.  

LtoR Chanda Causer, Brittany Riggins, Dalia Golchan,
Colleen Brunetti, Carl Hicks, and Jack Nino

I left this conference feeling more than inspired.  I left with a fire inside of me.  There are so many ideas running through my head of how we can make Generation Hope After Dark even better in 2014 -- it’s in Indianapolis if you haven’t heard --, how we as Generation Hopers can spend more time together at conference, and how I can see all these new friends without waiting until 2014.  Also on my mind is how we as Generation Hope can make a difference in the fight against pulmonary hypertension beyond the support we give one another.

Young Adult Advisory Board: Driving Generation Hope Home

By Sean Wyman

Sean Wyman

During 2009 things were changing at PHA, and questions were being asked of the young adult patients on how PHA could better serve those who utilize their service. I was privileged to be a part of a focus group conference call with several young adults who have pulmonary hypertension, and we were being asked questions on how PHA could better serve us and others like us. I think at that moment was when things started to take place and soon after this conference call, myself and several others received emails asking if we would like to be part of the Young Adult Advisory Board for PHA. The goal of the Young Adult Advisory Board was to help develop programs for young adults and young professionals in their 20’s and 30’s.  Many of us have different needs than the children and older adult counterparts. Throughout the last two years, the Young Adult Advisory Board has helped bring forth the Generation Hope Google group, Facebook page, blog, and other resources for young adults with pulmonary hypertension.

Lindsay Nicol

Colleen Brunetti

 The advisory board consists of several young adults who are active in the community raising awareness and are advocates for pulmonary hypertension. Colleen, Brit, Lindsay, Sean (me), and our newest addition Josh have been working within our communities—online, locally, and beyond—to help enrich the lives of others that are much like ourselves, young adults that want not to be defined by our PH, but to inspire others to continue to fight and continue to hope. Colleen summed it up best when she said, “I helped start Generation Hope because I wanted to give back to the community and create a safe space where people our age could gather and share similar experiences.” Personally, I share the same sentiment, and I know that Brit, Josh, and Lindsay feel the same way. We work closely with Chanda at PHA to continue to provide ideas on how to improve PHA and Generation Hope services for young adults.

Brittany Riggins

Joshua Griffis

In closing, we on the Young Adults Advisory Board are here for you and always welcome comments and ideas. If you’re fortunate enough to be joining us at the 10th International PH Conference and Scientific Sessions, and you see us, let us know what you think. Finally, Colleen, Brit, Lindsay, Josh, and I would like to invite you out to Generation Hope After Dark on Friday, June 22, 2012 at 9pm. We hope that you’ll come out and meet with us and other young adults like you.  Rumor is a Special Generation Hope Drink will be availabe for purchase. We look forward to seeing you there!

Finding Your Voice

This year I’ve been learning a lot about finding my voice. Not my singing voice, that is reserved for solo car rides and the occasional group karaoke.  No, I mean my PH Voice. The voice that gives me the power to make a difference.

See, for the first year or so after diagnosis, I didn’t have much of a voice. I had a case of nausea from trying to deal with all the drama that PH brings, but wasn’t doing much about it. What could I do? I had this disease and it was supposed to side-line me before too long.

But then Generation Hope came along, and I realized that I had a lot of ideas of what I could do, and we as patients as a group could do, to make our experience (and ultimately then our outcome) with this disease better.

I found my gift is talking and writing. Other people have gifts in fundraising. Good for them, because while fundraising is the obvious way many people think of for making a difference, it isn’t my gift. And that’s okay, because we need people to put on incredible fundraisers and we need people like you to do… well, whatever it is you do.

So I started talking, and I didn’t shut up. Haven’t shut up, in fact. And the crazy thing is, people are listening. People at the PHA listen and when patients have ideas and wishes and hopes, they do everything they can to make them come true. Friends and family are listening. Because I’m talking, they better understand what PH is and some have stepped up to really do amazing things for our community. Even my state is listening, because I had a chance to go on Connecticut Public Radio and participate in an interview with Rev. White from PHA and Dr. Trow from Yale. 

You find your gift, you find your voice, and people sit up and pay attention.

What’s your gift? My sister is a hobby photographer, so she started Amharc Photography and donates a significant portion of her proceeds to PHA. My friend Sam is a nurse, and she donated her skill and know-how to help me write an article on talking to your kids about your disease. My phriend Kimberly has a gift of bringing people together. The facebook groups she’s started online have grown by leaps and bounds in a matter of months. My phriend Stu has the gift of networking. Want to know what’s happening in the PH Community? Who needs a helping hand or a round of applause? Ask Stu! Jack Stibbs has a gift for I don’t even know what exactly, but the man has raised over a million dollars for PH through his annual fundraiser, and that’s nothing short of amazing. Carl Hicks has the gift of compassion. Even after he lost his daughter Meghan last year, he continues to stand by us and fight.

I could go on and on naming people who knock me out on a daily basis with what they put in and accomplish for us. The people in our community are incredible, and if you’re a part of that, you have something incredible to offer too. What is it?

Share your PH Video Story!

Please enjoy the latest Generation Hope in Action (GHA) video from Sean Wyman, as he discusses Tips for College with a Chronic Disease.  GHA is a subgroup of Generation Hope that strives to raise awareness, advocate for the cause and increase education for young adults living with PH. If you are interested in social networking, civic engagement or letter writing, we would like to hear from you.  Currently, we are planning several video messages to share with the Generation Hope community and their social networks.

Are you asking yourself, “What can I talk about?”

• Tom Lantos Pulmonary Hypertension Research and Education Act of 2011
• Dating with PH
• Adoption and PH

• College life and PH

• Working and PH

• Managing insurance and PH

This is a fun and easy way to educate the general public about living with PH as a young adult. If this sounds interesting to you, I would like to invite you to share your story!  PHA is happy to loan you a flip camera to make your video message.  For more information, on how to get started, please contact Chanda Causer at PHA.