Taking on chronic illness, together.
For those managing chronic conditions each day, those days have additional hope of getting better.
How do you ask?
Via a new shared experiences and community web based application called BetterDays.
BetterDays is a new open and inclusive platform for those with chronic conditions to...
- Share knowledge and insights to help others
- Discover new ways to take charge of your health
- Take action on what you learn with your providers
Recently launched in April 2021, BetterDays helps people take on chronic illness, together.
BetterDays openly states their purpose and invites others to Stand with us and join our journey.
The company's vision, belief, and mission include respectively...
- A world where health is equitable for all
- Solutions for the underserved = solutions for all
- To build technology that empowers the individual, unifies underserved communities, and transforms healthcare for all
The BetterDays platform was created with an intuitive user experience and ease of use features for desktop computers, mobile devices, and tablets that allows a user to...
- Post blog-like health experiences, ask questions, and share what is (or isn't) working.
- Answer other members' questions, start discussions, and join conversations.
- Let other members know when they share useful information that helps you.
Founded On Experience & Empathy
CEO, Rob Castellanos, founded BetterDays because healthcare failed him.
Per Rob's story on the BetterDays website, he struggled many years knowing something was wrong with his health. He struggled to get answers...
Like many of you, I went through 5+ years of misdiagnoses and years of seeking what could help me manage my debilitating conditions and symptoms. Doctors misdiagnosed me with everything from spinal cancer to soon-to-be paralysis and left me writhing in pain and hopeless. As I hobbled around like a 90-year-old man at the age of 18, I soon realized that healthcare often doesn’t help you find answers… even if those answers do in fact exist.
Then a break and relief...
I stumbled on an article describing the condition Ankylosing Spondylitis (AS) and was elated that it matched my experience almost exactly. Hopeful, I went to a new rheumatologist so I could seek a diagnosis and finally experience some closure. To my relief, the doctor confirmed my AS. I finally knew what was wrong with me.
However, that relief was fleeting...
With newfound closure I was excited, yet my relief was short-lived. Diagnosis marked the new beginning to an equally grueling journey in trying to find what could help me. Ankylosing Spondylitis doesn’t have a cure and can lead to full paralysis. Doctors offered expensive medications that would only treat symptoms, could cause liver failure, and would put me and my family further into debt. I decided to look elsewhere.
Rob delved into more research and learning...
Ultimately, what changed my life was learning from a community of people who were in the exact same position as me. I spent hundreds of hours on internet forums and eventually connected with several people who had learned to manage their AS through a starch-free diet. By no means does this diet work for everyone, however, research theorized it could starve the bacteria correlated with AS and stop your body from attacking itself.
I tried the diet for a month and to my surprise I slept without pain medication for the first time in five years. It wasn’t perfect, but my life was forever changed. My pain reduced 90% and I re-discovered a life free from constant, debilitating pain. I never imagined that day would come.
And from this experience, a vision with empathy for all who suffer from chronic conditions...
My five year journey helped me realize that we can all learn from each other’s experiences. The only power we have is to accept the things we cannot change, fight for the things we can, and receive through others, the wisdom to know the difference. We can all choose to welcome a mental shift to accept, fight, and learn from life’s struggles, however, we don’t have to do this alone.
This is why we founded BetterDays. We want to empower you to find answers, share knowledge, and take action on your conditions with others. In the hope you come out living a happier, healthier life with chronic illness.
About Ankylosing Spondylitis (AS)
Ankylosing Spondylitis (AS) is a rare type of arthritis that causes pain and stiffness in your spine. This lifelong condition, also known as Bechterew disease, usually starts in your lower back. It can spread up to your neck or damage joints in other parts of your body.
"Ankylosis" means fused bones or other hard tissue. "Spondylitis" means inflammation in your spinal bones, or vertebrae. Severe cases can leave your spine hunched.
There’s no cure for AS.
As someone who personally suffers from Systemic Lupus Erythematosus (SLE), I was privileged to be part of multiple beta test groups. This allowed me to have an advance look at the BetterDays platform, and provide feedback as a user who suffers from a chronic condition.
I've utilized other Lupus related application platforms before such as Lupus Corner and Inspire. In comparison I find the new, bright, and clean user interface of BetterDays to be a positive user experience with many intuitive and ease of use features.
Whatever I could think of was easy to find and supported. Features such as...
- profile details and picture
- create posts and comments to share my health experience
- ability to mark posts "useful" to help you find content you are looking for
- tag posts with conditions
- filter the health experiences of others by what is relevant to me
- ease of use image uploads
- optional emails and alerts for new members, new experiences, or comments
- text formatting support
- supported by my phone, tablet, and desktop computer
I can say that the community itself was open and inclusive. Belonging cues were easily created via the interactions with others with the same or different conditions.
I look forward to utilizing the site and eagerly await what Rob Castellanos and team have planned in their future vision for BetterDays.
For More Information...
Do you suffer from a chronic condition and would like to learn more about the BetterDays community?
See the BetterDays website for information.
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