According to the National Institutes of Health (NIH) there are over 6,000 rare diseases, and an estimated 25 to 30 million Americans living with at least one rare disease. Many rare diseases remain vastly unknown and receive fewer funds for research than those with greater awareness. Rare Disease Day will take place on Feb. 28 to recognize these diseases and those living with them.
One rare disease with low awareness among the general population is pulmonary fibrosis (PF). PF is a progressive and debilitating lung disease that causes shortness of breath, a chronic, dry cough, and fatigue. The lung scarring caused by PF is irreversible. A survey conducted by the Pulmonary Fibrosis Foundation (PFF) in 2020 revealed that a vast majority of Americans (86%) do not know the symptoms of the disease.
“Because awareness of PF and its symptoms remains low, many patients face late diagnosis, making it difficult to slow the progression of the disease,” said William Schmidt, President and CEO of the PFF. “Increasing public understanding about PF and other rare diseases is imperative to drive more research, improve speed of diagnosis and advance overall quality of care.”
Driving Awareness and Promoting Advocacy is Key
If you or a loved one is diagnosed with a rare disease like PF, here are four ways you can self-advocate and help expand education about the condition:
1) Share information and resources about your condition with your loved ones. Not only will they then have a better understanding of what you’re experiencing physically, but they will be better equipped to advocate on your behalf. Sharing online resources is an easy way to start the conversation. For example, the PFF offers a range of materials, including aPF Fact Sheet, webinars and videos, and web pages to explain the disease to all of those affected.
2) Build a strong and holistic support system of people that you trust. First and foremost, ensure that you have a solid medical team that specializes in or has access to experts on your rare disease. Secondly, engage with resources within your community. For example, consider joining or starting your own PF support group. Finally, connect with an affiliated organization like the PFF. Many rare diseases have external groups that have been created by those impacted by the condition to centralize community, resources, fundraising, and research.
“The importance of connecting with credible resources and meaningful community for those with a life-altering illness cannot be overstated,” said Amy Hajari Case, Senior Medical Advisor for Education and Awareness for the PFF. “Living with a rare disease like pulmonary fibrosis is not something you have to experience alone.”
3) Use your voice to expand awareness by participating in or sharing information about patient advocacy initiatives. Programs and events, such as Rare Disease Day, are valuable opportunities to bring visibility and resources to organizations. Awareness months (such as Pulmonary Fibrosis Awareness Month), legislative initiatives (such as reaching out to your members of Congress), and fundraising run/walks (like the PFF Walk) are great opportunities to expand public education and engagement for rare diseases such as PF.
4) Seek out research opportunities like the PFF Registry. Find or ask your medical team about opportunities to participate in research such as clinical trials (for example, use tools like the PFF clinical trials finder) . Additionally, there are options to participate in self-reported registries, like the PFF Community Registry, which can provide a valuable opportunity to voice your lived experience as a patient, caregiver, or family member. Sharing your unique story and experience with researchers can help to improve outcomes and treatment options for today’s and future generations.
Resources for Those Living with PF
Recognizing Rare Disease Day and elevating resources to educate the general population benefits everyone – not just those living with a rare condition. The PFF plays an important role in providing trustworthy resources to patients and their families, as well as a source of community and support for those living with or impacted by PF.
For more information about PF symptoms, risk factors and treatment options, visit AboutPF.org.
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