It all started in 2007 when our co-founder's, Roslyn Rawlins, 12 year old daughter, Ryan, had her first tonic clonic seizure resulting in an ambulance ride to the emergency room. Within a few days, one tonic clonic seizure quickly turned into Ryan having over 100 seizures a day. In a matter of weeks, things took a dire turn for the worst as Ryan began suffering from severe and debilitating side effects from her medications. When her medications became less effective, dangerous prolonged life threatening seizures became the norm, along with constant trips to the emergency room, multiple tests, and long hospitalizations.
They struggled trying to figure it all out and understand everything that came with receiving an epilepsy diagnosis. Roslyn did the only thing she could think of to try make sense of everything - she began meticulously documenting everything about Ryan's health, seizures, medications, moods, etc... Unfortunately the only tool available to her was pen and paper. Needless to say, it was chaotic, time consuming, frustrating, and scary.
Four years and reams of binders later, all of the observational data she journaled pointed to Ryan having just as many frontal lobe seizures as right temporal lobe seizures. This went against the conclusions and recommendations of her medical providers at the time. Trusting and believing what she was observing, Roslyn was able to successfully fight and advocate for better testing and treatment. Instead of Ryan needlessly losing her entire right temporal lobe to surgery, tests discovered that the true cause of her epilepsy turned out to be a brain tumor located between her frontal lobe and right temporal lobe. Ryan successfully had surgery in 2011 to remove only the tumor and has been seizure, medication and brain tumor free since!
Having lived it and fully understanding the importance of journaling in dealing with epilepsy, Roslyn has been using her personal experiences and knowledge to help others. Believing there had to be a better way other than pen and paper, Bleuberi was created to give you a dynamic tool to better manage your loved ones' condition. LooseLeaf's secure mobile health platform allows you to more easily track your loved one's overall health, symptoms, triggers, treatment plans, medications (including cannabis), side effects, and outcomes. Using data analysis to give you instant feedback, you can now more easily make sense of all the information you're currently manually writing on paper.
The Bleuberi team is working hand in hand with you, leveraging the power of data and technology to give the patient community a better solution to help manage their complex chronic health conditions and improve quality of life. You are not alone in this. We are here to help you find answers, make sense of the chaos, and empower yourself!