The PH Mile was just one stop on our way to victory…
Friends, I would like to share with you some of the courageous women that walked with us during The Phenomenal Mile this past week.
Meet Janet. Janet is one of many women that has proven an incredible inspiration to our team while we are preparing for our final destination, RAAM!
Janet, like so many other women, may not race around the country, but she did walk our mile, the same mile that thousands of others walked in support of pulmonary hypertension.
Many of you may be wondering what all of the fuss is about. What is it like after all, to have pulmonary hypertension? For those of you that don’t have PH, it may help to understand where we are coming from.
For some newly diagnosed patients, learning they have PH is often like being hit in the head with a brick. That’s really not anything anyone wants to happen.
But imagine this experience, for just a moment:
You are preparing for the journey of life. Travelling the road ahead, with dreams and visions, when an ordinary trip to the doctor turns into what seems like a life sentence.
Let’s say you are short of breath. You figure, it’s nothing serious. Perhaps you need to slow down. Or better, you need to speed up … maybe, get some exercise, right?
Some families go in for a wellness check before a trip to the Caribbean or before a cruise or retirement trip, only to learn that travel is out of the question.
What Pulmonary Hypertension Feels Like Inside and Out
Pulmonary hypertension for many is that life-changing diagnosis that can send you upside down and second-guessing your every decision.
While some patients may have no symptoms, others may learn they cannot travel, they cannot climb stairs, and that even a simple trip to the kitchen can cause dizziness and breathlessness.
While frustrating, it is important to understand that physicians and researchers ARE working around the clock to raise hope, and awareness.
If you or someone you know has recently been diagnosed with pulmonary hypertension, please do not lose faith. There is hope. There are people that are available to love you, to care for you and to support you in your journey.
That is what Team PHenomenal Hope is all about. That is one reason we decided to journey across the country.
Meet Diane. She’s another one of our superstars. We are so grateful for the faces of our supporters, and our friends and family. You too may be one of the many faces of PH, supporting us behind the scenes. We know you are there, and we thank each of you silently each and every day.
Some patients may wait years for a proper diagnosis. It is not uncommon for patients to travel to several doctors, receiving improper diagnosis before they uncover the cause of their mysterious symptoms.
This delay in receiving a proper diagnosis can result in complications, and delay life-saving treatment!
Some stories are remarkable. There are patients that visit a half dozen doctors, and experience symptoms for 15 years or more, before receiving the proper help they need. This pattern alone is enough to make a person think they are going crazy.
There is good news, and bad news in this.
First, the good news. YOU ARE NOT CRAZY. You are sane. If you feel something is not right, you are probably right. Most patients know and understand their bodies well. If you can, seek a specialist to get the care that you need.
Know there are support groups, professionals and others available to support you in your journey. If you have symptoms, especially shortness of breath, it is very important that you receive an accurate diagnosis. Unfortunately, this is one of those symptoms that is often very difficult to pinpoint. This does not mean however, that you should have to go from doctor to doctor, year after year, without a proper diagnosis. If you are not getting better, and have not received an appropriate diagnosis, then you must push in, and push on until you receive the right diagnosis, the one you know is correct.
Delaying a diagnosis by 15 years can delay life-expanding treatment. That is worth saying 1, 2 and even twelve more times. Physician specialists all over the country, including the doctors at UPMC offer a comprehensive diagnostic program for evaluating symptoms of PH and related disorders. You can find care from another specialist if you need help. . . find care from someone; if you need a referral then start the process now.
If you suspect that you or someone you know has pulmonary hypertension, seek help sooner, not later!
A team of experts can help make a difference in your life, and the life of others.
Remember, RAAM is just 8 short weeks away! Are you ready to RACE across America? Join us in our amazing journey… see you soon.