A New Way of Connecting for People with CP

Frantz Alexis Headshot

Guest post by Frantz Alexis

One of the frustrations I have dealt with because I have cerebral palsy is that it is often difficult to find other people like me, who have CP, to talk to. The growth of the internet, specifically social media, has been very helpful in addressing that issue. Facebook groups, online forums, and the web have been invaluable resources. However, I still struggle with using these resources, as they often associate my posts with who I am and there is not a way to delete a post once I put it out there. I would bet that anyone with a health issue can empathize with the desire to communicate with others anonymously about some of the more private or potentially embarrassing aspects of their condition.

A few months ago I posted a question about my orthotics in a Facebook group for people who have CP. The question wasn’t that embarrassing. However, I didn’t want it exposed to a large audience.  Imagine my surprise a few weeks later when I was having dinner with a family member and she asked if I was able to resolve the issue. Apparently, the post was visible to anyone who was friends with me on Facebook! Needless to say, I was not happy. I wanted a way to ask these types of questions anonymously. After my experience on Facebook I started doing some research and many folks expressed interest in such an app.

Recently, I launched an app which couple of friends and I developed – Candor CP.  The app lets people chat anonymously with others who have CP. Having something like this app would have been like a gift from heaven when I was an adolescent (truthfully, it’s a godsend now). Growing up I had no one to talk with about some of the challenges of being different from everyone in my community. If I was ever frustrated or embarrassed, and it did happen on occasion, I had no one to chat with that could relate to my experience.

A couple of years ago I was researching having yet another surgery to manage the symptoms of my CP. On paper, the procedure looks very scary and fraught with risks,  my doctors and some friends advised me against having it done. The term “crazy” was thrown around quite a bit. While continuing to research the surgery I stumbled upon a Facebook group for people who have had it done.  It would be quite the understatement of the year to say that the people I was able to chat with in that group were instrumental in my decision to go forward with the surgery. Since I tend to be a private person I found that I communicated with members of the group mostly via private message. During these chats I learned quite a bit about the procedure, it’s benefits, and what it felt like coming out on the other side of the surgery. The personal endorsements from my new friends is what helped to confirm that I was making the right decision regarding having the surgery.  It’s a shame that their insights are locked away in my inbox and not publicly so that others can benefit. The surgery changed my life and gave me the ability to do amazing things like complete a Spartan Sprint. This is yet another example of how beneficial communicating with other CPers has been for me and can be for others.

Since launching the app there have been awesome conversations on a variety of topics: dating, surgeries, treatments and even fashion advice! It was also covered in a blog post by a Huffington Post blogger who also has CP.

I am very happy to see that people have found the app to be as helpful as I do!  I wanted to create the app because I learned first hand how powerful sharing experiences can be for people who medical conditions and I knew that there were people who were not sharing because there was no way to do so in an anonymous way. Candor CP is here to fill that gap!

Frantz Alexis
Frantz Alexis is a Product Manager in New York City he can be reached via email at frantzsdr@gmail.com.