A disease is considered rare in the United States when it affects fewer than 200,000 people (fewer than about 1 in 1,635 people), according to the Rare Diseases Act of 2002. The European Union considers a disease rare if it affects fewer than 1 in 2,000 people. Other countries have their own definitions of a rare disease, which usually revolve around the rate of incidence.
After my idiopathic pulmonary fibrosis (IPF) diagnosis, I began to learn more about rare diseases in general. I was surprised to learn that IPF is considered rare. Nearly 200,000 patients are affected in the U.S. and over 5 million patients worldwide. About 40,000 people die in the U.S. from IPF each year, which isn’t too different from the annual number of 42,260 people killed by breast cancer in the U.S. Yet, it seems everyone is aware of what the pink ribbon symbolizes, but not the IPF blue and red ribbon.
Despite the high mortality rate and incidence rate, many people have never heard of pulmonary fibrosis. That was the case with my friends and family when I shared the news of my diagnosis with them. In light of that, I can understand why it’s considered rare.
Sometimes, I want to loudly and proudly advocate for the needs of patients with IPF. Other times, I want to quietly educate others about my disease. Then there are the times when I don’t want to talk about it at all and try to mold a normal young adult lifestyle.
Much of my world now comprises people affected by this life-threatening lung disease. That is my choice. I feel closest to other IPF patients because they can relate to what I am going through and they intimately understand my struggles. That gives me peace and comfort. I feel less alone as a result.
Sometimes, however, I’ve encountered people outside that community who know about IPF, and suddenly, it no longer felt rare.
Awareness makes a difference
A few weeks ago, I had my car in for service. During the work, the front desk manager and I began chatting. I was wearing my supplemental oxygen, which is uncommon for someone my age. Unsurprisingly, my lung disease came up in the conversation.
This woman’s eyes welled with tears as she told me of her friend who had been diagnosed with familial PF in his late 20s. He had just received a double-lung transplant. Sadly, it didn’t go very well and he is really having a tough time. Since he is now in his early 30s, he is being considered for a second transplant. However, he doesn’t know if he wants to endure that surgery again.
I couldn’t believe my ears. Someone around my age in the same city I live in was also diagnosed with PF as a young adult. Not only did the front desk manager know what my lung disease was, but she was intimately living the complexities of it with her friend.
After that conversation, I reflected on other times I’ve encountered people who knew what IPF is. The number of experiences I could recall off the top of my head surprised me. In those moments, my disease suddenly didn’t feel as rare as the numbers make it out to be.
As a patient with IPF/PF, what can you do to help raise the profile of this life-threatening lung disease?
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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