Rare Disease Day is on Sunday, February 28th. On the last day of February, Pulmonary Fibrosis NOW! joins many individuals and organizations in raising awareness among the general public about rare diseases and their impact on people’s lives. The more we can learn about these may diseases, the more we can discover potential treatments and cures. 

Rare Diseases Affect Many People. The total number of people with rare diseases might surprise you. According to the Genetic and Rare Diseases Information Center, a rare disease is defined as a condition that affects fewer than 200,000 people in the US. Even though each disease seems rare, altogether there are up to 30 million Americans living with a rare disease. Since 1 in 20 people live with a rare disease at some point in their life, it’s no wonder that so many people choose to celebrate Rare Disease Day each year! 

Rare diseases can go undiagnosed or be misdiagnosed. Before receiving a diagnosis for Pulmonary Fibrosis (PF), many people receive treatment for asthma, pneumonia, or bronchitis instead. Idiopathic pulmonary fibrosis (IPF) is particularly hard to diagnose because there are many other interstitial lung diseases that mimic it. Many potential causes must be considered and ruled out before IPF can be diagnosed. Therefore, people frequently experience lengthy delays before receiving treatment. In one study, over half of the participants reported being misdiagnosed initially.

There are simple ways to spread awareness on rare diseases. One easy way to spread the word is to share a meaningful article with the people in your life. Here is a list of links that you can send to your friends, family, and even physicians:

  1. Learning about the different types of interstitial lung diseases
  2. Learning about the different types of PF
  3. Distinguishing different diagnoses such as PF, COPD, and cystic fibrosis 
  4. Recognizing common PF symptoms
  5. Noticing early signs of PF
  6. Communicating with your doctor after receiving a diagnosis
  7. Connecting with providers to support you on your journey
  8. Understanding the struggles of PF- and ways to cope
  9. How to fight PF now!
  10. How to help someone you know who has PF

The more you learn about rare diseases like PF, the more capable you are of fighting it. Even when it feels isolating, remember days like this — Rare Disease Day — and know you are not alone in discovering ways to receive treatment and ease symptoms.

To connect with others who have or are impacted by PF, join our online community forum, and attend our virtual support groups on Zoom.

Related Post

Getting a Second (or Third) Opinion

If you’ve recently received a diagnosis for PF, it might be helpful to get another professional’s opinion. This is called Read more

Tips for Finding the Right Care

There are many different kinds of specialists who can help people with PF. This can include: Your primary care providerPulmonologistsA Read more

Deciding on Treatment Options for PF

Have you or someone you know been recently diagnosed with Pulmonary Fibrosis? If so, you probably have a lot of Read more

Understanding Research Publications

Many people want to improve their self-advocacy skills, but they don’t know how to get started. If you or someone Read more

Leave a comment