“My name is Suhina Singh, and I am a medical doctor, chronic disease warrior, and recently started my entrepreneurial journey to make health data more accessible with privacy and security first in mind. As a medical doctor and chronic disease warrior, I know what it’s like to struggle with managing one’s health. I was diagnosed with Hashimoto’s and Ankylosing Spondylitis and grapple with the pain, stiffness and fatigue that comes with it when I have a flare-up. It’s been difficult to feel ‘normal’ again, but I refuse to let my struggles define me.
Living with an invisible illness is always a challenge, because although I may look well, I may be in significant pain. Like most fellow chronic disease warriors, I’ve learned to cope with the pain and listen to my body. I slow down and rest when needed. Unfortunately, not many individuals understand the struggle. As such it can be an isolating journey at times. What has helped me tremendously is having an incredible support system of family and friends. In addition, connecting with others in the invisible illness community has proven to be invaluable. It helps to know that I’m not alone in what I’m experiencing in day-to-day life.
I am a physician turned entrepreneur. The journey of entrepreneurship is not an easy one and it is definitely a lot harder when managing a chronic condition. I need to be incredibly mindful to maintain adequate sleep and manage my stress levels. I would probably say it’s more of a challenge compared to someone that is healthy. As for my symptoms, I maximize my good days and on my bad days I slow down. Instead of fighting my body, I accept things as they are.
Despite being a physician myself, the one thing I’ve come to realize when managing one’s health is that it’s incredibly difficult to do. For years, I have been managing my own health issues. Being diagnosed with Hashimoto’s and Ankylosing Spondylitis was difficult for me; it took a toll on my day-to-day life. It felt like no matter what I did, I could never feel ‘normal’ again because of the pain and fatigue that came with my conditions. Even though I had gone through medical school and became a doctor, it seemed impossible for me to manage my own health properly despite knowing all the facts about my conditions. This was mostly due to my health data scattered all over the place from physical boxes, emails, and photos.
Through this journey, the one thing I realized is that managing health data is not only crucial for physicians but also for fellow chronic disease warriors. It helps us better manage our condition and coordinate our care among different healthcare providers. Keeping track of our symptoms, biomarkers, medications, diagnostic tests, and medical history helps us see patterns and make informed decisions about our care. Unfortunately, organizing and managing this data can be overwhelming and stressful.
Having seen these challenges time and time again, and currently struggling with the same challenges myself, I wanted to find a way to help others like me better manage their health with data. This led to the creation of Jonda Health with a mission to unlock the power of useable real-world data to improve health outcomes and advance medicine with privacy and security by default preserving patient self-sovereignty. Our technology stack is still being built, but to help and empower patients like me with their data today, we have deployed part of our technology stack into a project called Jonda. Jonda is an app that helps people manage their health data in a secure and easy way.
It has already been incredibly beneficial to me, helping me better manage my health and making it easier for me to coordinate care with my healthcare providers. The positive feedback from others using the app reinforces my motivation to keep going to make a meaningful difference.
Managing my health is a constant balancing act, and I have to listen to my body and adjust accordingly. Lifestyle for me is incredibly important in terms of rest, diet, physical activity and managing stress. For me, having purpose helps me to push through whatever I’m feeling or experiencing. I’m feeling grateful to do what I love and at the same time make a meaningful difference to the community and wider healthcare ecosystem. I take the time to focus on the small things that bring me joy. Whether it’s listening to my favourite music, spending time with my loved ones, or even just taking a much-needed rest.
I want others to know that just because a person looks ‘normal,’ it doesn’t mean they are feeling their best. Chronic illnesses can be incredibly debilitating, and it’s important to be mindful of that when interacting with those who are struggling. Living with a chronic illness is not a choice, but it is a journey that requires strength, resilience, and support.”
Suhina
Singapore
“We would love to support others in their journey together with iamvisABLE by providing full access to Jonda with the access code iamvisABLE for a three-month period.”
Get the Jonda app now on the App Store or Google Play.
