Living With A Rare Disease

By Kiara Tatum

Another year has come, and Rare Disease Day is on Saturday, February 28.  And the facts still remain that there are 30,000 PHighters living with PH in the United States, and I'm one of those PHighters. I know that there are others all around that are living with PH and other rare diseases, and we need to spread the word about PH.  There are many ways to get involved and share your story.

"Rare Disease Day was first observed in Europe in 2008.  It was established by the European Rare Disease Organization (EURODIS).  In 2009, EURODIS asked NORD (National Organization of Rare Diseases to be its partner in this initiative and to sponsor Rare Disease Day in the United States.... In 2014, more than 80 countries participated and, through social media, the awareness, and participation has an even broader reach.  Each year, Rare Disease Day is observed on the last day of February.  The goal is to draw attention to rare diseases as an important public health issue that cannot be ignored." History of Rare Disease Day

Having a rare disease can be a very lonely and scary place where you feel no one understands what you're going through and you don't know what your day will be like.  It doesn't only affect the person with the disease, but it affects their family and friends.  I was diagnosed with PH in March, 2006, and I have been PHighting ever since that day.  But I didn't do it alone.  I have my family there to support me and care for me when I can't care for myself.  I have PHriends that I can call upon for support and understanding.  I have my friends that remind me of who I was before I had PH and that I'm still that girl.  So this Rare Disease Day, I'm going to celebrate, share my story, and bring awareness of PH to the community via social network.

PHA participates in Rare Disease Day.  Will you join us? Find out what you can do to get involved.  Let's share our stories, let's bring PH awareness to all around the world this year for Rare Disease Day. Rare Disease Day 2015 - PH