We Have a Responsibility to Raise Awareness About Rare Diseases

With Rare Disease Day 2017 coming up tomorrow (Tuesday, Feb. 28), I have been thinking a lot about responsibility. As someone living with a rare disease (idiopathic pulmonary fibrosis, or IPF), I am feeling a bit of responsibility around my efforts to raise awareness for this disease, and others that are impacting the people I have come to know and respect throughout this journey.

Some of those diseases include pulmonary hypertension (PH), chronic obstructive pulmonary disease (COPD) and various other interstitial lung diseases (ILD). I am aware that rare diseases account for so much more than just lung diseases, but because this is the type of illness I am living with, that is where my thoughts go.

It’s interesting to me how I feel the responsibility of creating awareness for IPF and other rare diseases not only on Rare Disease Day, but all year round. I am not sure how I am going to commit yet to doing this, but the idea is a little daunting because I want to do it well and use my experience of living with a rare disease to create some sort of powerful awareness campaign. That being said, I also am just trying to navigate the daily living and breathing (or lack thereof some days) of having a rare disease, and contemplating how much responsibility should lie on my shoulders to create this awareness? Sadly, I think the answer is most of it.

I get many comments and emails in response to my columns, with people sharing their experience of this disease, be it themselves or a loved one who has the diagnosis. In that correspondence folks tell me that they feel a responsibility to create awareness around the disease that has impacted them or their loved one. In some cases, they want to create awareness about the rare disease that ended their loved one’s life.

In dealing with the grief and overwhelming emotion of losing someone you love to a rare disease such as IPF, is it asking too much that we also are responsible for creating awareness for that disease? I can’t answer that question, so I suppose it is rhetorical, but I feel a bit of pressure about Rare Disease Day and my responsibility to create awareness for the very important goals of increasing funding for clinical trials, better treatments, or a longer life expectancy than the prognosis given upon getting a diagnosis of IPF. (That diagnosis three to five years without a lung transplant.) I guess my point is that I wish (and hope) that more people, not just those of us burdened by a rare disease, would step to the plate and create awareness on our behalf, too.

Time to act on awareness

In a world where social media has such power to evoke change and create awareness, it seems an easy enough task to ask people to help us raise the profile of rare diseases, such as IPF. Perhaps some of this responsibility I feel has come from my past experiences of sharing other important causes, such as organ donation, IPF news topics and transplant success stories, which are rarely re-shared by people on my social media platforms. (For those of you who do, thank you.)

I understand that not everyone is as passionate as me about those topics. Why should people worry about the organ donor rates in Ontario if they aren’t relying on an organ transplant to save their life? However, this same mentality has me fearing that Rare Disease Day will go under-shared on social media platforms and the profile won’t be raised enough to create the awareness that will be responsible for increased funding for better treatment options and hopefully, in the near future, longer life expectancies.

This may be why I feel the responsibility of doing a “good job” at sharing and creating awareness on Rare Disease Day. With that in mind though, I want to ask all of you to please join me in raising the profile of rare diseases, not just IPF, even though that is the one I am desperate for treatment options.

Outcomes won’t change and, without your help, success stories will continue to be minimal, especially for IPF. So, will you join me in doing whatever you can on your social media platforms and in person to raise awareness for rare diseases on Feb. 28?

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.