Rare Disease Day is regarded as a special day for rare disease patients, relatives, and caregivers to unite and raise awareness for rare diseases. It always occurs on the last day of February, since during “Leap Years,” it occurs on February 29 – the rarest date of the year. In March, right after Rare Disease Day wraps up, it’s important to encourage the global momentum and advocate efforts. Together, we can fight for increased awareness, improved access to medical care, and more research on treatments and cures. Read on for an interview with a patient who has pulmonary fibrosis to hear how she’s continuing the momentum and inspiring advocacy.
INTERVIEW WITH A PATIENT WHO HAS PF
PF NOW!: What is your connection to PF?
Tina: My connection with PF was going to the doctor in 2019 with a dry cough and finding out I had what they said was cloudiness in my lungs.
(Tina has since received a formal PF diagnosis)
PF NOW!: What are some of the hardest things about finding the right care?
Tina: I think one of my hardest parts of the disease was learning how to be my own advocate. Being a mother and taking care of my boys, it was always about them. Now I have to take care of me and make sure I get taken care of.
PF NOW!: We know you travel quite far for appointments and treatments – can you share what that’s like for you & how you manage to make it happen?
Tina: When I am making an appointment to go down to [redacted for privacy], I have to take into consideration 3 hours travel time before my appointment. Then I have to think how long my appointment will be and what time I will be done for rush hour in either of the cities on my way home. I have prior trips saved on my cell so I can reference it on a particular day and time.
PF NOW!: We also know you’ve had some very difficult experiences in medical settings – can you share about your recent challenges & how you’ve self-advocated?
Tina:
What’s really hard is knowing that your lungs will never be the same again. Going into an appointment knowing you are going there to get help but then being hit with fragrances on others makes it even harder to breathe.
It took me some time talking to my friends and getting advice as to who I could reach out to for cleaner air in hospitals and doctor offices. Reaching out to different organizations so we have good quality air to breathe was very eye-opening. Where to start… [lung associations] can not police private hospitals. There are no laws for hospitals to be fragrance free.
After days and weeks of emailing my state representatives and senators, sending complaints to the Department of Health, the Joint Commission, and emailing the hospital, and doctor’s office, I have continued to get pushed around.
I have reached out to the local paper and an article is coming. This has been a long dark road to travel. We need change for everyone to be able to breathe. We can make a difference.
PF NOW!: It sounds like the process has been such a rollercoaster. Has anyone or anything helped throughout the ups and downs?
Tina: What has helped me out the most is talking to others in this group and getting their strength and support along this journey of being an advocate.
PF NOW!: What advice do you have for yourself and for others who may relate? Is there anything else you’d like to share to help us continue the momentum from Rare Disease Day & bring more awareness to fighting PF?
Tina: Share your story often. Share the disease with others. The more we talk to others and put this disease on the radar, the more people will learn and make it known.
Thank you Tina for sharing your story! Feeling inspired?
We encourage everyone—patients, caregivers, relatives, medical professionals, journalists, advocates, and more—to take action and spread awareness about pulmonary fibrosis:
- Educate Yourself and Others – Learn about PF facts on our site, become a volunteer and share your story, and share resources to help others understand the disease too.
- Participate in PF-Related Events – Attend local or virtual events that highlight the challenges of living with this rare disease, and offer emotional and practical support to those in attendance.
- Not sure where to start? Sign up for our virtual support group meetups here.
- Attending an event in person? Send us a group picture if possible so we can help spread the word!
- Advocate for Research and Funding – Support organizations working toward new treatments and a cure for PF.
- Engage on Social Media – Join our Facebook group to connect with community members and help keep the conversation going.
Rare Disease Day was a reminder that collectively, rare diseases are actually quite common, and as such: we are not alone in this fight. By continuing to raise awareness together, we are working toward a future where advocacy, community engagement, research, and education all offer hope for better treatments and a cure.
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