HEALTH INNOVATION BEGINS WITH ME
UNDERSTANDING CHRONIC ILLNESS THROUGH SELF CARE, STORYTELLING, DATA, AND INSIGHT TO IMPACT HEALTH OUTCOMES.
UNDERSTANDING CHRONIC ILLNESS THROUGH SELF CARE, STORYTELLING, DATA, AND INSIGHT TO IMPACT HEALTH OUTCOMES.
At Self Care Catalysts, we're humbled by your trust when you openly and intimately share your life journeys, whether you’re battling illness, waiting for diagnosis, a proper label for symptoms that don't go away, preparing for treatment or anxiously waiting for what could come next. We also understand that while our healthcare providers are there focusing on the right treatment, there are days when you wish you weren’t on it because it interferes with your day-to-day activities. For many of you, having access to clinical trials and credible information is just what you need to enable you to be around for those important milestones in your loved ones’ lives.
It's never anyone's choice to be ill and definitely not your desire to stop working nor be distant from your friends, but the burden of illness gets in the way of living... of going about your normal days. We get it, and so we're determined to empower you with opportunities to enable you to become active participants and decision-makers in your care.
Health and wellness is your destination, self care is the path to get there.
We are thrilled to provide you, your care partners, providers and researchers with the tools to help us build the Self Care Movement. With the aggregated data that you share with us, we generate insights that matter to you and the way you manage and have control of your disease.
We believe that when you are informed, you are more engaged with your health.
Beyond your treatments and other interventions, we understand that there are other things that you're concerned about such as access to other medications, financial support, looking after your emotional health, enhancing your daily life experiences, giving you the chance to win against or at least prepare for the challenges brought about by illness.
Now, you can Do, Learn, Share all ideas and interventions that you believe will help you live your new normal.
We all know that about 90% of care happens outside our providers’ clinics, and there are many things we wish they knew but they don't. In between our physician visits, life happens. You sometimes defer treatment or wish you could change it. Now is the time for you to complete your "health stories", to build evidence when you're getting better or worse, why you feel hopeful or uncertain. It's about time that your real life experiences are taken seriously to drive drug development and improve care.
We will bring to you opportunities to finally share how your treatments and interventions are helping you a lot or less, let others know how they can support you on activities that are working for you and most importantly, invite your family and peers to cheer you on from the side.
It is our hope that you will become the creators and builders of the Self Care Movement.
By sharing your experience with the Self Care Movement community, you not only invite us into your lives, but you share your health data. We promise that as custodians of your data, we will share the insights that emerge from our analysis when patients’ voices are aggregated, and pass those insights into the hands of decision-makers to advocate for smarter drug development, patient-centered health care and improved patient support programs.
Your friends from Self Care Catalysts
I honestly think good nutrition is about listening to your body and I really do think it’s all about balance: some days I will absolutely be craving a steak and I will go for it, but on other days I’ll just fancy some veggies.
Will I continue to use Health Storylines for Asthma? Yes, of course. Even though I have apps I am comfortable with for my calendar and medications, there is so much peace of mind and control over my illness.
No matter what you're struggling with, I think tracking your progress is a HUGE help! And Health Storylines has an amazing collection of apps that are sure to work for you! So I would highly suggest that you check them out and download a FREE app today!
When I talk about being chronically ill, I usually start the story around 2006 when I was diagnosed with Chiari Malformation but, I was diagnosed with asthma many years before that. Moving from the moldy, humid, East Coast to the dry desert has made my asthma attacks less frequent but I still suffer from daily asthma symptoms.
Now that I am older, I know that most events in the body have to do with ’cause’ and ‘effect’. As a result of this knowledge, I have set out to discover the where, what, when, and whys of my asthmatic episodes.
I love the idea of having a list on my phone app since I usually don’t forget my phone. There’s a place to record questions and notes from your visit. It’s difficult for me to stay organized with the brain fog I have time to time so this is a great feature for me!
This is an amazing app, in the world of technology, which can tend to overcomplicate our lives, if you ask me.Keeping up your health can be hard work. Think about it. We spend countless hours gawking at our smartphone displays, continually playing on social media, or those addictive online games, and watching videos that may actually have adverse affects on our health in the long run. But choose carefully, and your smartphone can be your most powerful…and healthiest weapon.
I also think about the women of the past who will inspire the women of the future. The women who my children may never come to know but will lovingly remember them through memory. There is that hope that my children, the women in my circle, will embody some of the things from women of the past. Forever. That is what we can do for them.
I have IBS (Irritable Bowel Syndrome) and this app has helped me monitor my IBS and help figure out what causes me to have a flare and then I can record the results in the journal on the app. I also have Interstitial Cystitis, Endometriosis, Pelvic Floor Dysfunction, Anxiety and Depression.
I ask that when you come across someone with a rare disease like Cystic Fibrosis, you don't solely look at them like that's all their made up of- because they are not. They are normal, weird, smart, silly, happy and sad like you and me.
I am terrible at keeping orgainized track of many of my healthcare needs: doctor’s appointments, medications, sticking with a healthy exercise routine, taking medications on time, etc.
Today, we celebrate the great partnership we’ve built with you. Together, we stand in unity as a force to be reckoned with. To make our own decisions, to drive our healthcare outcomes, to build awareness - no matter what the reason, we are stronger when we work with each other.
We started the Self Care Movement in 2016 hoping to build a strong community of people living with chronic illnesses and we want to thank you all for making that possible.
Maintaining good health with HIV can be difficult, especially because of all the different health regimens involved. When did you take your last pill? Which pill on which day?
Instead of giving up, though, I found ways to make these motion part of my day-to-day. Moving became my self care.
So how do we tell the difference? No, seriously, I’m asking you. Hopefully, you know because I clearly haven’t figured it out.
We can learn to prioritize, plan, pace, and manage daily life. And we can learn a lot about ourselves in the process.
My self care? Trusting my doctor. Listening to my body…when I’m tired, I rest, when I’m hungry, I eat andwhen I’m afraid, I pray. I ask for help. I welcome the emotional and spiritual support of others. And, the most important thing through it all, I try to stay positive.
I'm also teaching them about self-care which is important, not only because everyone should know how to take care of themselves, but also because three of my four kids inherited Ehlers Danlos Syndrome from me.
Do you believe in the power of patients to drive health care decision making? Interested in learning more about the impact of Real World Evidence? Share your questions and goals with us and join the Self Care Movement as a partner or sponsor!
I’ve had asthma since I was about sixteen but I never gave much thought to self-care tips for asthma control. Focusing on myself and my health wasn’t something that I was concerned about until I was much older.