01 Nov, 2019

“We are here in order to live!” I An awareness campaign for Cystic Fibrosis around the world

cystic-fibrosis-awareness-project-campaign
01 Nov, 2019

Lies diesen Blogpost hier auf Deutsch.

 

Have you ever wondered how your life would have turned out if you had been born in another country?

I have repeatedly asked myself this question in recent weeks and months. During our almost one-year trip in our van through South America, I wanted to find out what life is like with my chronic disease, Cystic Fibrosis, in Peru. And I could hardly believe it when I read what the current situation is like there.

 

Cystic Fibrosis in other nations – by example of Peru

While in many countries there has been enormous progress in research (only this week a groundbreaking new drug was approved in the U.S.A. that has the ability to reverse damage in the lungs caused by the disease) and life with CF (= Cystic Fibrosis) is steadily improving, the reality, as here in Peru, is sobering: Kids with CF are only expected to live until about the age of 12 years (in Germany life expectancy with CF is currently at about about 40 years).

I had the urgent desire to learn more about the issue and contacted the Cystic Fibrosis Organization in the capital of Lima, which consists of some very courageous CF moms and grandmas. Meeting them in person really was a unique experience. They were also quite excited when they learned that I was already 28 and that I looked so healthy.

These inspiring mothers, who reminded me very much of my own (because my mom fought for me and my well-being back then, too), told me that a CF diagnosis in Peru (if made at all, which is rare in itself) is still misconceived as a death sentence and doctors believe that there is nothing they can do for the patients. Of course, these mothers know (especially through the Internet and through connection with other CFers around the globe) what the situation is like in the rest of the world.

Therefore, children do not get the treatment they need because they were born in the “wrong” country. The most basic CF drugs we have had in many countries for decades are not available there. And this is only part of the sad reality that many CF families around the world face. The main goal, as these CF mothers told me, would be to raise awareness for this situation and prove to doctors that it is possible to live (well!) with CF – they just have to look beyond their own (country) borders.

 

Creating awareness, increasing pressure

This is how this video project came about. If we can show by way of example that CF adults all over the world do live despite this hereditary disease (and even very well!), we can show that CF may not yet be curable, but can definitely be treated. To this end, I would like to create a compilation of video messages from adult CF patients from all over the world, who introduce themselves and report on what has helped them to live with CF, so that we can show how the development in research and the adequate treatment have enabled us to live as we do today. 💪

If you want to help by sending in your own video message (2-3 minutes with a phone camera would be great), just write me a message or email me at dyahrling(at)gmail.com so I can send you more info. Then CF organizations in any country can use this video to show it to doctors, health insurance companies, clinics or political instances and perhaps this way make a difference – so that children with Cystic Fibrosis no longer have to suffer the fate of being born in a country where they don’t receive the same treatment as in others.

 

“We are here in order to live!” – Take part until November 10th!

This is just a small teaser, so you can still participate until November 10th! We would be very happy if you would share your story with the world and send in your own video message if you have CF and are 18 or older, so that we can create worldwide awareness of the situations in these less fortunate countries.

With this I hope that we can show CF patients, parents, families and doctors around the world that there is hope and that we all have the right to be treated, the right to live to adulthood and longer, and that it is worth fighting because the treatments, whether new or old, are out there.

I would like to sincerely thank the participants who have contributed so far for their video messages and for taking the time to do so. All you need to participate is your mobile phone camera and the willingness to tell your story.

I really hope you enjoy the video! Please share and participate in this movement – because we are here in order to live!

 

P.S.: Your video message will be edited for the final video, so you don’t need any knowledge in video editing – you can send in the raw video file. Also, probably only parts of your message will be included, so the content doesn’t overlap and the video doesn’t become too long. The video will later be visible on different social media channels (Instagram, Facebook, Youtube and here on the blog) and will be shared and viewed in as many countries as possible. The video can also be used afterwards to be shown to doctors, health insurance companies, clinics or political entities. 

 

Cystic Fibrosis Campaign – Video Teaser

 

1 Comments:

Leave a comment:

Your email address will not be published. Required fields are marked *