Friends and Braxton supporters, I need your help!
As you all know, I’ve been very involved with U.R. Our Hope and they helped us so much as we struggled to find a diagnosis. I have been asked to join a panel discussion with U.R. Our Hope and others to discuss the use of online resources, social media, and blogging to navigate the healthcare system while on a diagnostic journey.
When I was finally ready to share my story, the internet was my saving grace. It is through the internet, my blog, and Facebook that I have been able to learn so much and connect with so many people. In fact, it is through my blog that I first learned about Braxton’s diagnosis! I had several people contact me asking if he had been tested for Rubinstein-Taybi Syndrome well before our geneticist even thought it a possibility. Reading about it ahead of time made the news much more tolerable and I was truly finally able to breathe when we received our test results. Having someone to walk this journey with me, being able to connect with other parents, learning about “real life” experiences instead of relying on “textbook” definitions has helped immensely. I want to reach other people and help them in the same way that I have been helped.
If you know anything about South by Southwest (SXSW), you know that people from all over the world and from all walks of life attend this event. This would be the ultimate chance to reach out to others and let them know they are not alone. The internet has made so much more possible for me and for many others I know. I honestly do not think I could have survived this and be the parent that I am 20 years ago. The information and resources readily available via the internet are simply astonishing. Help us help others!
All you have to do is vote for our panel ideas by clicking the links below. They will also be in the sidebar of our site until voting ends September 6th! You do have to create a Panel Picker account, but it’s quick and easy. I promise! Create an account, click the “thumbs up” to vote for BOTH of our panels and that’s it! You’re all done! You can only vote once, but we would so greatly appreciate it if you did! If so inclined, you can even leave a comment to tell others who are browsing through topics why they should choose ours! Or if you have any questions, leave them there and we’ll be happy to answer them.
Using Social Media to Navigate Healthcare
Medical professionals, patients, and savvy navigators of the healthcare system will discuss resources to use when traditional channels are not effective or timely when a person or a family is faced with a medical crisis. The healthcare system can be daunting to those unfamiliar with the language and culture of the medical community. The benefits of online education, support groups, blogs, radio blog shows, Facebook groups will be explored. We will give specific examples of how individuals and families can benefit from utilizing social media on their diagnostic journey. We will discuss the benefits of having a patient advocate, whether it be an individual or an online community. We will talk about how to protect your privacy in this open and public forum. From finding a diagnosis to negotiating with healthcare networks, third party payers, and providers to have services covered, we will delve into the pitfalls that hinder effective care, and then provide solutions.
On a Diagnostic Journey
Navigating the healthcare system when the diagnosis is not clear is a daunting process. Individuals with undiagnosed disorders lack identity and are often isolated and forgotten. This panel will provide resources to assist those with undiagnosed disorders in finding answers through advocacy and collaboration. On the panel are both individuals who know the undiagnosed journey, and those whose mission it is to guide and advocate for them. Utilizing social media, Skype, online support groups, blogs, and radio blog shows the panel members have been able to reach out “without walls” to help the undiagnosed community.
Thank you all so much for supporting this important mission!