Here Comes the Sun

By Marissa Barnes

As we enter into the warm summer months, I wanted to introduce myself as PHA’s summer intern in the Patient and Caregiver Services branch. The summer time is my first and foremost favorite time of the year, not just because I break from school, but because every day I feel rejuvenated by the warm air and happier with the sun shining.  A few years ago I read this quote and since has been my life motto, to

“Always bring your own sunshine.”

 I know for some, being in the sun can cause irritation and the time spent under the sun’s rays for others their summer might not even be all that sunny, for me, living in D.C. we have thunderstorms lined up every day of the week. Regardless of the weather, I try to find a little bit of sunshine in everything I do. I had made a post on the Facebook group asking what some of your summer plans are to be this summer, whether you are vacationing, spending time with friends, involving yourself in certain camps or groups, etc.

 Kevin Mayhood – Paskawych shares his summer plans saying, “I have a slogan and its ‘if I can do it, you can do it’ and I keep trying to push myself to attempt new things, despite this. I am 32, I was diagnosed in 2012, and I have IPAH currently, although there is a thought that we may have an idea as to a potential associative disease. I am spending my summer in my hometown of Marietta, Ohio, but it doesn't mean I am not excited. When I was going through my diagnostic process, I needed something to keep my mind off of everything, so I jumped into an idea a friend, and fellow theatre professional, had about starting a professional summer theatre company in Marietta. So, we formed a group, and over the last two years built up what we needed to pull it off”. (Mayhood-Paskawych).

Kia Thompson-Allen who is 39 and was diagnosed with PAH in 2007, tells us this summer she will be, “keeping my 8 year old busy, taking him to St. Louis to six flags and the zoo there”. Kia recommends staying in the water parks to stay cool, plus drinking icy beverages and finding shade when you can.  Kia explains, “you know it's hard on us PH'ers in the heat, plus my son being a severe asthmatic heat isn't good, so most activities we plan are indoors: library, Chuck E. Cheese, and an indoor trampoline facility; all those places are air conditioned :) and ways to  have fun and stay cool for us”!

Kristine and family at Detroit Zoo

Kristine Green is 35 and was diagnosed with idiopathic pulmonary arterial hypertension in July 2011.  She says, “This summer, I am ALL about family time! I am blessed to stay home with my four year old son. So far, we have gone to Movies Under the Stars- where you watch a movie outside up on the mountain to support our local firefighters, library reading programs, both of the "splash pads" in our town and played a lot in our yard. I am most excited to go camping on the Umcompagre Platuea and for a rafting trip on the Colorado River. Too cool off, we load up our three pups and head to the river or swimming pool (minus the dogs)! We like to make our own Popsicles or freeze fruit to munch on to stay cool too. My son and I are supposed to visit family/friends in Michigan (where I am from) for 17 days- visiting numerous cities while there. However, I am not sure about going right now since I am experiencing troublesome side effects from meds. If we do go, we'll go to Lake Michigan, the Detroit Zoo, festivals and maybe a Tiger's game! I will need a vacation from vacation after that! I like a lot about summer, but harvesting fresh fruits and veggies from our garden, camping and spending time with friends are probably my favorites”.

We love hearing from all of you and your plans for this season. Sometimes the heat can be intimidating to get outside and have fun, but there are many ways to stay cool and still enjoy yourself. I hope you all can find a little bit of sunshine in each part of your day

Get Ready For Rare Disease Day!

By Kimberly Smith, PHA Intern

February 28^th is Rare Disease Day and it’s time to celebrate! Rare Disease Day was established in 2008 by EURODIS (Rare Disease Europe) and its Council of National Alliances, and is celebrated annually on the last day of February. Rare Disease Day was created to raise awareness and advocate for rare diseases that many people are unaware of, but that so many in the world are affected by. Events are held in countries throughout the world, from here in the United States to Spain, Japan, and everywhere in between! Many people use this day as an opportunity to raise their voices about rare disease and go to their local politicians and advocate, and events are happening at State Houses across the country, sponsored by the National Organization for Rare Disorders (NORD).

The Global Genes Project, a non-profit organization dedicated to rare and genetic diseases, is also celebrating Rare Disease Day with various events and activities dedicated to raising awareness. Their “Wear That You Care” campaign allows participants to order, for a small donation, a “Genes Ribbon” to wear along with their favorite pair of jeans to show their support and raise awareness for rare and genetic diseases. Click to learn more about the Global Genes Project and their Rare Disease Day events.

There are so many ways you can celebrate Rare Disease Day! Here’s a few ways some members of the PHA Community celebrated last year:

• Last year on Rare Disease Day Colleen went in for a haircut and decided to donate 12 inches of her hair to Locks of Love! She had planned on donating it sometime in the future, and after a little encouragement from her hairdresser, she decided it would be a great way to mark the day.  
• Rachel made cupcakes with names of rare diseases on them to celebrate last year. Delicious!

How will you celebrate Rare Disease Day this year? Visit www.rarediseaseday.org to find events happening near you! 

In May, All Things Are Possible

By Kevin Paskawych

There is something in the air... and I am not referring to the pollen that constantly reminds me of why I actually “kind of” like winter. My allergies aside, there is something magical about this time of year; as my grandmother used to say, “May is the most hopeful month of them all.” I have to agree. May has always been a month of hope for me. Graduations bring the hope of new adventures, new jobs bring the hope of personal betterment, and new friends bring the hope of something more to this life. This year, my hope is for continued improvement with my condition and for a new life adventure that last year seemed to be on hold indefinitely.

Arguably, the hardest part of dealing with PAH is the fundamental lifestyle change that most of us have to endure. What was our daily life is quite often thrown out, and we are forced to adapt to what is so often called our “New Normal.” Activities that we once knew as routine can be forbidden. And for some of us, working and even our hobbies become impossible tasks. Having to make so many changes so quickly can be depressing, and I have heard more than one patient comment on how their work or hobbies—activities now forbidden—were the reason for them to be alive. It is easy to feel the pain in a statement like that; it is harder to understand that all is not lost, and, especially at this time of year, there is hope.

Perhaps it is fitting that World PH Day is in the month of May, particularly for younger patients. If May is the most hopeful month of them all, then I believe in a beautiful symmetry with being a part of the generation of PHers known as “Generation Hope.” We have the hope of new research, new findings, and new medications that are working towards giving us longer, fuller lives. We also have our peers and their stories of improvement, their stories of overcoming obstacles many of us have, and their support as part of the group to get through the new challenges we face in our lives. For my own part, this May is particularly hopeful.

One year ago my fiancée Karen and I had to postpone our wedding indefinitely due to my then “unknown” condition. We had to stop our strolls along nature trails around Marietta and kayaking afternoons and bike rides stopped. We wondered if we would ever get to do these things again the way we once had. Then, we discovered that changes in life did not mean we had to stop life. Kayak trips became fishing trips from the shore; nature hikes became light strolls through the neighborhood. We didn’t let PH take joy from us; we simply adjusted our activities and time together fittingly. We found our own hope in finding things that I could still do, that were adequate substitutes for what we used to do. We found hope in our doctors who diagnosed me, and worked with both of us; we found hope in the medications, and how quickly I seemed to respond to the various treatments. Finally, we found hope when the doctors agreed to release me for pulmonary rehabilitation. One year after we initially postponed our wedding, Karen and I were married this past weekend. We have found yet more hope in the month of May, and we have hope aplenty for the time to come.

May is an amazing month, and I believe it can prove to any of us that hope is there, that joy is there. We have to find it for ourselves; the path of one is not necessarily the path for another. In my case hope came from my improvement while on medication, the joy from finding new, more easily doable hobbies and pastimes; and being able to do that which had been postponed last May. The year takes shape this month. As the days get longer, the weather gets warmer, and we see the rebirth from winter’s cold grasp. This is going to be another year of hope; that there will be new research, that there will be new therapies, and that we will all have a good year. May is the month of hope. It is the month of rebirth. It is the perfect time of year.

Spring Into Action!

By Kiara Tatum

With warmer temps here, it finally feels like spring in the air.  Keeping that in mind, it’s time to get outside and spring into action.  It’s not easy for young adults with pulmonary hypertension to do a lot of outdoor activities because of the limitations that our bodies have.  We can’t run or jog 10 miles a day or swim laps.  Here are some tips that might help you get started to getting active this spring.

1. Before you start any exercise or activity program, consult with your pulmonary hypertension specialist.
2. Start slow.  Begin with a short distance and short sessions.  Start walking, riding a bike, or whatever chosen outdoor activity for about 10 minutes per day, at least three times a week, and close to home.  Once you notice that you are able to endure that without becoming too short of breathe for you, then increase your days and distance or time you do that activity.  Then maybe by the end of the summer, you will be able to take a nice long hike or ride on a bike trail.
3. Be prepared.  Make sure that you have bottled water with you or access to clean water, wear sport socks and appropriate sneakers, and lightweight clothing.
4. Don’t be ashamed to rest.  If you are doing an outdoor activity, and you feel yourself becoming short of breathe, dizzy, heart palpitations; then just stop and rest.  It’s nothing that you should be ashamed, embarrassed, or afraid to do.  Your body has limitations, and because of your PH diagnosis can’t always push yourself on.
   
5. Pay attention to the temperature and humidity.  Don’t do an outdoor activity if the temperature and/or humidity is too high.  It’s harder to breathe in the humid weather for those with pulmonary hypertension or other lung illnesses.  
6. Don’t do it alone.  Sometimes what’s great is to have a friend, family member, or even your dog tag along with you.  Just remember that you need to set the pace for the walk, hike, bike ride, or whatever chosen outdoor activity.

Whatever outdoor activity you choose—walking, bike riding, etc., enjoy it and have fun!  It feels so good to be able to be outdoors and enjoy the warm fresh air.