Autoimmune Citizen Science

Vivek-23

Vivek Mandan

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.

The Interview

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:

  1. 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.
  2. 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!

123Our ultimate mission is to change the way autoimmune disease is treated in healthcare today.

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!

ACS_Impact

The example graphs on the site are interactive: 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 example of an interactive graph from Autoimmune Citizen Science

Another example of an interactive graph from Autoimmune Citizen Science.

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!

22 Comments

Filed under Uncategorized

22 responses to “Autoimmune Citizen Science

  1. Elizabeth

    Super cool!! Thanks for sharing this great information. Earlier this week, I had stumbled upon a Lyme site doing similar crowd sourcing – and it got me really excited thinking about the power of our community. I’m so glad this is real a thing! Count me in.

  2. Susan

    This is great and I want to help! I signed up at their website, but it’s not clear how to volunteer to be a beta tester. When I click on the “I’m interested” button it just returns me to the top of the page. Can you advise?

    • Right now they are busy building the site. The beta launch will be on May 22nd so by entering your email you get on the VIP list of beta testers and they’ll get in touch with us closer to the time. I was just so excited about this initiative, I wanted to put this post out now, to let people know about it, but also to give Vivek & his team some final-lap encouragement.

  3. Tracy

    This is absolutely the best timing! I was in Excel today and making sure all my labs results were entered every month for the past 9 months. Then I listed all of my medication and supplements, including all the times my methimazole has been changed over this period. But what I don’t have is how I felt from month to month and the changes that transpired. Thank you from the bottom of my heart for creating this app for the collective autoimmune community. I could just cry from joy.

    • I’ll make sure Vivek sees your comment, Tracy.

    • Tracy, your comment means a lot to me, and also to the other members of the team who are working so hard to make this happen. We think it’s fantastic that you’ve been tracking and hope our tool will help you to make the most out of your data on this journey. Feel free to reach out at any time if you have any questions.

      Thanks,
      Vivek

  4. Margie Edwards

    Please add me to the list! Very, very impressed & would love to help in any way to make it work!

  5. Gabriele

    Autoimmune conditions need more attention for sure! Most conventional doctors know little about them. I’m exited to learn more. This work is so important and could potentially help many people. Thank you…

  6. Leigh Rollins

    Would this work for Type 1 diabetics? I have a continuous glucose monitor and a pump but still struggle with managing my glucose levels. I also have Hashitoxichosis, digestive issuses and skin rashes.

  7. Sarah

    Thank you so much for highlighting this. I’ve signed up 🙂

  8. Battling an Invisible Epidemic, Autoimmunity, is not the easiest. It is especially challenging when many healthcare providers, friends, family members, and even government and statistics, do not acknowledge the problem.

    Coming together, and amplifying the Lonely voices of Autoimmune and Chronic diseases is one powerful way to make this invisible disease visible.

    Let’s collaborate! share your story and comment http://bit.ly/1NxURWu

  9. Pingback: RobbWolf.com - Autoimmune Data Aggregation

  10. Do you need to have a diagnosed condition to use this app? And what if it’s chronic but not autoimmune (e.g. sleep apnoea).

    Many thanks,
    Lia

    • Once the full site is launched, I think it will be open to everybody. It is specifically designed for people with chronic health conditions, and sleep apnea counts! For the beta launch, Vivek and his team and bringing in 25 beta users at a time to test the functionality of the site as they build it.

      • That’s very useful – I’ll alert my friends with chronic-but-not-autoimmune conditions. I’ve sent a direct request to join the beta testers, along with a couple of questions. Thank you for the quick response!

        Lia
        (Currently writing the book “But I’m Not Depressed”, a layperson’s analysis of when and why physical symptoms are misdiagnosed as mental)

  11. Joanne Baumann

    Sounds fantastic! Can’t wait to see it hit the App store. I tried to support your fundraising campaign but it wouldn’t accept my Postal Code (not a Zip code) I wish you the best and thank you for designing this awesome sounding tool.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s