Many people who improve their autoimmune symptoms want to share what they have learned, so others can benefit too.
Most people just start a blog.
Vivek Mandan is creating Autoimmune Citizen Science, a free site that will enable anyone with an autoimmune condition to track personalized data to support their healing process.
Vivek and his team are looking for testers for the beta launch of their site this Spring. I’ve already signed up. Anyone else who is interested in the potential of measurement as part of their recovery will want to scoot over to Autoimmune Citizen Science to sign up as a beta user, too.
Consider this post to be your personal invitation from Vivek!
This month, I interviewed Vivek, who is 24 and lives in Ohio, USA, to find out more about his experience with autoimmune disease and about his vision for how Autoimmune Citizen Science could change the way we research and treat complex chronic health conditions.
Me: First things first, tell us about your experience with autoimmune disease.
I was diagnosed with Hashimoto’s when I was 12. I had numerous health problems before that (digestive issues, chronic migraines), but it became obvious when I hit puberty and wasn’t growing.
We were fortunate to have an endocrinologist neighbor who recognized my swollen thyroid (missed by several doctors before her), and I was put on Synthroid. Synthroid helped me get through puberty, but I still had many symptoms, with the most significant being frequent migraines, digestive issues, fatigue, anxiety, and depression. I didn’t connect any of these together, and neither did my family.
We went to doctors for my migraines, but we didn’t receive any answers, only prescriptions. My mother has always been very anti-medication, so aside from Synthroid, I didn’t take medication frequently.
This continued through my first 2 years of college. I was oblivious to the state of my health. I took each symptom piece by piece and didn’t connect anything together. I knew I had hypothyroid, took medication for it, and that was it.
However, when I entered my 3rd year of college, I developed unremitting brain fog and fatigue. I was bleeding profusely every time I had a BM, due to massive hemorrhoids. I had joint pain in my shoulders, elbows, knees, and hands. My depression and anxiety reached a new level.
I didn’t feel like a person, I was barely existing. I remember waking up one day, and thinking “This can’t be normal. It just can’t be normal to feel this way. Something is wrong.”
The journey began there. I went to several different doctors. Some doctors cared, but didn’t know what to do other than increase my dose. Some doctors thought it was in my head, and tried to prescribe me SSRIs.
Fortunately, I found Dr. Izabella Wentz’s book, Hashimoto’s Thyroiditis: The Root Cause. It was validation that I wasn’t crazy and that I wasn’t alone.
That was my first entry point into the enormous online community of chronic illness sufferers working together. This was around 2 years ago. Since then, I’ve explored many different perspectives and participated in various online communities.
I still suffer from several symptoms, but I’m much better than when I started.
Me: How has measurement helped you in your recovery process?
When I started this journey, I quickly realized 2 things:
- Our situation is complicated. There are so many different symptoms, systems involved, and factors that affect our diseases. It’s an incredible amount of complexity and variability. It was too much to keep track of at the time, even if my brain was working correctly, let alone when I couldn’t form and keep a thought in my head for longer than a few seconds.
- There was conflicting information all over. Highly educated people debating over which diets, supplements, and medications were best. Everyone had science to back up their claim. Thousands of people claiming one protocol saved their life, while hundreds of others claimed it made them worse. How was I supposed to get any signal out of all this noise?
The answer to this question is straightforward: try something and see if it works.
Following the Scientific Method, I would form a question, do some research, construct a model and hypothesis, run an experiment, and figure out what happened.
I omitted tracking from my early experiments, because tracking was hard and I was exhausted. It was a mistake. This lesson was hammered home to me after I had an extremely successful experiment, stopped it prematurely, tried to replicate it, and couldn’t. There are a plethora of exogenous factors that have an impact – medication, supplements, food, sleep, sunlight, physical activity, life events.
On top of that, it’s important to remember that each experiment works on the same body – yours. Every experiment alters your body, and affects the experiment following it.
Before I started tracking, experiments would be really hit or miss. I could guess why something had worked or why it hadn’t, but it mostly felt like I was muddling through, day by day, without making progress. Once I started tracking, I was able to see which factors helped me progress, and what set me back.
Having real, solid data allowed me to fine tune and tweak my progress in a way that I never could relying on memory alone.
Many times it’s easy to see all of your horrible symptoms day after day and not notice or remember the small improvements that build upon each other. Recording my data also allowed me to work more easily with my doctor and with my family. It gave them some insight into what was going on and some direction in how to help me.
I finally started seeing that I was moving forward. It gave me hope.
Me: You are launching a platform called Autoimmune Citizen Science. Tell us about your vision!
The massive online community that has formed around chronic illness is ample evidence that something is wrong. Forums and Facebook groups provide immense value in that they connect people with autoimmune disease together and allow them to provide support and share information. We want to go one step further and organize it all. Right now, everyone is on their own journey, communicating only bits and pieces of it in small posts here and there, which quickly disappear in the noise.
We would love to see this app bring the autoimmune community together in a scientific way. While we’d love for all autoimmune patients to use our app, if even 1% of them were to track their daily progress, we’d have an unprecedented amount of information.
Data aggregation for autoimmune diseases has never been done at this scale and we’re excited to provide a resource to facilitate that.
The ultimate goal is to reinforce once and for all that the autoimmune community is huge and the existence of so many different kinds of autoimmune disease is not an insurmountable hurdle when we can provide tons of organized data together.
Me: What will it offer to individuals who are struggling to make sense of their autoimmune disease(s)?
First and foremost, we want to enable people with autoimmune disease to make sense of their health and see what’s working and what isn’t. It all starts with tracking.
Our app will make tracking easy and provide simple, clear visualizations so that users can make sense of their autoimmune disease.
Millions of people are working on their conditions individually. By tracking together, we’ll be standardizing and organizing the data, thereby ensuring individual efforts contribute to a larger resource.
The data that users input throughout the day will give back to them in a number of ways, the most powerful of which is the ability to visualize their data. Seeing is believing right? For readers who haven’t had a chance to check out our site yet, we have a few interactive graphs about halfway down the page that illustrate this power of visualization. Please check them out!
Data visualization will help users identify relationships between symptoms and see the effectiveness of different treatments. It will provide people with a means to make sense of their autoimmune disease.
Another important area that we think this will improve is the relationship between patient and doctor. I know personally that 30-minute visits are not enough to cover all the symptoms that people are suffering from each day. Having an individual’s data organized and presented clearly will help doctors better understand what they’re going through.
Me: What do you hope Autoimmune Citizen Science will offer to the autoimmune community more widely?
We hope it provides the autoimmune community a reliable source for knowledge based on real aggregate data.
Users would be able to consult the database to see what’s working best for other individuals with similar symptoms. As the user-base increases, the app could compare an individual’s progress against the database to suggest treatments based on that user’s specific symptoms.People could bring these treatments to their doctors so they’re aware of all their options.
We want the autoimmune community as a whole to wield collaborative data as a real tool for pursuing inquiries.
Me: What are your aspirations regarding influencing research trends in the area of autoimmune disease?
In a nutshell, we want autoimmune disease to get more attention and more funding.
We want research to start looking into the commonalities between autoimmune diseases; having aggregated data will help us get this attention. Autoimmune disease funding is abysmal. With over $100 billion in healthcare expenses, autoimmune diseases only have a mere $850 million in funding. To put that into perspective, cancer costs are $57 billion, approximately half that of autoimmune diseases, while the research funding for cancer is $5.4 billion; over 6 times as much as autoimmune funding.
Dr. Bonnie Feldman presents an excellent case that a critical factor in this issue is fragmented categorization. Essentially, autoimmune diseases are currently categorized by the specific area of the body in which they manifest–Hashimoto’s is a thyroid disorder, psoriasis is a skin disorder, etc. Dividing up diseases in this manner ignores the fact that autoimmune diseases have a shared etiology. 25% of patients with one autoimmune disorder, tend to develop another. Check out Dr. Feldman’s fantastic article for more details.
We all recognize cancer is a big deal; it’s about time we did the same for autoimmune diseases.
Me: When does your platform launch?
We plan to have a beta product launched by May 22. The purpose of a beta is to have users who will actually use the app and provide us with feedback.
We want to make sure that using our app is effortless, especially since so many people struggle with fatigue. Tracking one’s health should not feel like a chore and we’ve considered that heavily in our design.
Our beta is limited – we’ll regularly be in touch with our beta users to see what we can improve, so we need to keep it small to be manageable. If you’re interested, we urge you to join our mailing list. We’ll keep you updated on our progress, and there’s no commitment.
Me: Once the full platform launches, what will it cost?
We don’t plan on charging anyone to track their data.
Money is tight when you’re managing a chronic illness. We don’t want to put any barriers up to stop people from working on their health and contributing data to the community as a whole.
However, as a company, we do have to keep the lights on somehow. Our plan right now is to make most data analytics free, and if people are interested in advanced visualizations, analytics, or other features, we may charge a small fee for those.
I want to emphasize that all data is aggregated and anonymous – no one can see your personal information. Your private data belongs to you.
We hope you’ll join us as a Citizen Scientist today!