Stormie's NORD 7,000 Mile Rare Movement

‘This February, I am joining NORD’s Rare Movement Campaign to raise awareness for rare diseases. Together, participants aim to move a total of 7,000 miles of donor-supported movement by Rare Disease Day on February 28th. There are 7,000 known rare diseases, and 95% of them have no treatment. Help NORD continue to support the 30 million Americans affected by rare diseases through patient assistance and support programs, research grants, advocacy and educational initiatives.’

This cause is one which is near and dear to my heart, because I am one of those 30 million Americans affected by a rare disease. I was born with RRP, or Recurrent Respiratory Papillomatosis, and diagnosed at 2 1/2 (after having been misdiagnosed with asthma). RRP is caused by the HPV virus, and researchers are still struggling to understand why those of us with RRP are not able to fight the virus properly (as would a typical, healthy individual). According to RRPF.org, there are an estimated 20,000 active RRP cases in the U.S. alone–hardly a dent in the 30 million Americans who are suffering with other rare diseases!

To this day, I have had over 300 surgeries in my short almost-30 years on this planet, all in an effort to control the tumor/papilloma growths so that I can not only breathe easily, but retain a functioning, normal voice (what’s ‘normal’ for me, anyway!). RRP takes its toll on a person’s body, physically and mentally. There is no cure for RRP, and because every individual case differs from the next, it makes it difficult for doctors to find one solid solution that will work for all of us fighting this disease. Recently, I have learned that the growths have spread from my larynx, reaching the tissue areas below my voice box and into my trachea. I will need to see a pulmonary specialist in accordance with my otolaryngologist, so that we can decide on the best way to handle this new development (and preferably, to prevent any lung involvement).

I would be incredibly grateful if you would help me support the mission behind this Pledge It Movement! Given that I have a chronic respiratory disease, I’ve never had a great deal of stamina and get out of breath easily, but I’m going to do my best to walk as many miles as possible in February (just in time for Rare Disease Awareness Day!).