Sunday, April 10, 2016

The Tube Fed Wife Turns One!

A year ago today I decided to broaden my horizons, and share my story with the world. After years of journaling my story on CaringBridge, which was only available to my family and friends, I came to Blogger with an idea to create a more custom space to raise awareness for Scleroderma. Hoping to reach a much vaster audience, I also decided to start sharing my experience with other media outlets such as The Huffington Post. 

To my surprise people were actually interested in my journey with this horrendous disease! Within a matter of months I was receiving incredible opportunities to speak at patient education conferences, write for major media outlets, work with influential organizations in the Scleroderma community, and teach seminars for medical professionals. I couldn't believe that by simply sharing my story I was actually making a difference in the community I set out to assist!
This blog has been such a blessing in my life, it has provided me an emotional outlet, connection with other patients, incredible opportunities to expand my advocacy, a platform for awareness, and most importantly the ability to help patients like me feel less alone in their battle.

Thank you to my many readers for your beautiful support through emails, comments, and the sharing of my posts. You all have made this blog a driving factor for Scleroderma awareness.

Image via The Scleroderma Research Foundation

One of my most recent endeavors has been working with The Scleroderma Research Foundation on their 2016 Spring Research Challenge. My story was shared alongside famous faces such as Bob Saget, who lost his sister to Scleroderma in the 90s. Their efforts in research funding has lead to incredible advancements in the treatment of patients like me. To learn more about their spring research challenge, or to donate to the cause, click here!


  1. Congratulations on all of the accomplishments you have had thanks to your lovely writing. Your openness about living with Scleroderma and other diseases has raised awareness and advocacy for other young adults. I really admire all that you do, and you are a very talented writer!

    All the best,

    Serena (worshipandtribute on insta)

  2. Hello Chanel I'm a survivor as well and I want to share my story: ..just click on about Jacob and you'll find my story there ����������