Advocating for the Rare

Posted by: 
Rima Manomaitis

rare  /rer/
adjective
(of an event, situation, or condition) not occurring very often. "a rare genetic disorder"

I never thought of myself as rare, but a disease that affects less than 200,000 Americans at any given time is considered rare. Cystic Fibrosis affects less than half of that number!

It’s funny how perspective can change depending on our age. When I was in elementary school, I never really thought about CF too much so I never imagined I would meet someone else with it. No social media growing up meant no CF Facebook groups or Instagram accounts to follow someone else’s journey or to make a connection. I didn’t know anyone with CF until around fifth grade when I met two CFers during a hospital admission and we were able to become friends. Was rare disease day even a thing back then? Probably not. As I got older, technology started advancing quickly. Sharing your life with the internet started to become more normal, but I didn’t “find” this wonderful CF and chronic illness community until 2015-2016. It was like this great big secret world that I could belong to appeared out of nowhere!

The vast amounts of amazing individuals there were sharing their experiences and raising awareness.

That is how my story began. As my health declined, the need for a double lung transplant became imminent. My sister, who decided to become my caregiver, helped me start a blog about our journey to new lungs. I started my Instagram account Lung Story Short at the same time to document it as well. We wanted to share everything about what it was like needing a transplant and how to get there. The ups, the downs, and everything in between! We didn’t want to sugar coat anything because that doesn’t do anyone any favors.

Both platforms ended up being very helpful to others who were in the same boat as me. After receiving lungs, my sister wrote a blog post everyday about my recovery in the hospital. We saw this as another opportunity to help people.

Discovering the CF community on social media, meeting so many of my now best friends, and seeing so many others with CF had changed my perspective on it being a rare disease. It doesn’t seem as rare as it once was back when I was a child. Now it seems like such a large community because I’m immersed in it. How could it be so rare if I know so many amazing people with CF? But when it comes down to the numbers, the United States and then worldwide compared to other diseases, it isn’t common. More than 30,000 in the US and more than 70,000 worldwide are affected by CF. Cancer and Diabetes numbers blow CF out of the water because they affect millions of people around the world. With numbers like that, us CFers are just in this tiny pool feeling like little rare jewels. So that means that every bit of advocacy and awareness helps! It helps get the word out that we need help! The more people know, the greater chance more donations will be made and more research therapies can be discovered quicker.

Cancer, diabetes, and other large scale diseases are very well known and well funded. The chances that people know what they are is much higher than the possibility of them knowing what Cystic Fibrosis is. CF has entered the media scene in recent years, exposing it to those outside of the community. Grey’s Anatomy episodes, Bates motel, a New Amsterdam episode, Five Feet Apart, sports players who wear a custom designed sports shoe, celebrities with it, or their family member with CF have all brought light to the disease. Every bit of awareness and education helps show the world just how rare it is.

I have become quite involved in being an advocate for CF, transplant, and chronic illnesses in the last five years. I’m currently on the advisory board for the CFF Rocky Mountain Chapter, and have participated in or volunteered at numerous events. I also often help out with nationwide events such at Breathecon and Transplantcon. I also volunteer with Make-A-Wish Colorado. I recently joined the board of directors for the CFLF, and am very excited to have begun my journey with them. Like I said before, every bit counts! Even if it’s one post a year, it reaches someone that may not have known about Cystic Fibrosis. They might even educate another person just by knowing you and hearing your story!

There are so many ways to be an advocate and spread awareness. Nowadays there are national days that focus on CF, and we even have a whole month dedicated to us!

So many campaigns and annual events, it makes advocating fun!

 

Help Others Live STRONGER and LONGER- 

 

 

Rima currently lives in Aurora Colorado and has become an avid hiker and snowboarder post-transplant. She received her double lung transplant in May of 2017. Now with the ability to breathe without struggling, Rima is able to do all the things she couldn’t before. Camping in the middle of nowhere without needing breathing treatments or the vest is one of her favorite activities. She graduated with a bachelor’s degree in Environmental science from Franklin Pierce University in Rindge NH. Rima is an enthusiastic advocate for Cystic Fibrosis. She has been involved with the Cystic Fibrosis Foundation for years, she’s even on the advisory board for the Rocky Mountain Chapter in Denver. In her spare time, she spreads awareness online through social media accounts to educate others on cf and post-transplant life. Rima is also a pizza enthusiast and enjoys making pizza from scratch and trying random crazy toppings sometimes.

 

 

***Views expressed in the CFLF Blog are those of the bloggers themselves and not necessarily of the Cystic Fibrosis Lifestyle Foundation*** 

***Please speak with your physician before making any changes to your CF management***

 

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