Vedrana is building an app for Hashimoto’s
This week, I’m doing things a little differently. I decided to highlight a wonderful project from Vedrana. If you followed along, you already know her from Spotlight ep 62! This week, she wrote a beautiful piece about Hashimoto’s and the app she’s building. Thank you Vedrana!
Published Nov 25th. Written by: Vedrana Tabor.
Why did I decide to build an app for Hashimoto’s?
The shortest answer would be: because I know the disease. I am a Hashimoto’s patient. I have been living with this condition for years. It has been running in my family for at least three generations and has profoundly affected all of our lives.
Hashimoto’s is an autoimmune disorder where our immune system is attacking and destroying the body’s own thyroid gland.
These are some of the “simpler” consequences of having an underactive thyroid. However, having an autoimmune condition means that there is a lot more going on in the body. Most strikingly: our gut, where the majority of immune response is formed, is especially sensitive. There are frequent digestive issues and irritable bowel syndrome (IBS) connected with Hashimoto’s.
Hashimoto’s is not a long recognized disorder, unlike cancer, which has been known since ancient Egypt (3000 BC). Hashimoto’s was first described and given its name in 1912, around the time my great grandmother was entering her teens. She is the most likely carrier through which I have inherited it. I do not know if she had it, but the rest of us following in the line did and do have it.
How far have we come since 1912? In the 1950s, one researcher wrote: “the disease described by Hashimoto’s in these terms nearly 40 years ago has ever since been attended by confusion and controversy.” Today it is not much different from most of the thyroid conditions; it seems that thyroid conditions as whole are mostly not recognized: 60% of people go undiagnosed! Cases of subclinical hypothyroidism (when there is an indication of a faulty thyroid, but not a fully presented disease) are projected to be present in about 10 to 13% of the western population. This is mostly when doctors (but it largely depends on doctors) do not prescribe any treatment, except waiting and observing. The fact is that a large majority of these cases will turn into a full-blown hypothyroidism within ten years. So, what can we do to prevent the full-blown disease? What if we track more diligently, eat better and exercise more? How to be more ready?
Why am I building tool for Hashimoto’s management?
Besides being a patient, I am a health entrepreneur and researcher with a Ph.D. in cancer research and am very much driven by enabling the empowerment of all the patients.
It takes a lot of energy and determination to maintain a healthy lifestyle to prevent the flare-ups and the progression of Hashimoto’s. With the increasing number of symptoms, their temporal and anatomic spread, changes in intensities as well as the individual differences, it becomes evident that Hashimoto’s is a complex disease. A disease where us patients can do much to manage it, and to contribute to slowing down the progression with keeping our health in check.
To do so, one needs to know and understand a lot of quite advanced biology, such as immunology, nutrition, genetics and endocrinology; and the connection between them. This year, there were around 500 scientific publications on the topic of Hashimoto’s; this is about 1.5% of all-time publications on this subject, and they cover everything: headaches as precursors of Hashimoto’s (help with the early diagnostics), potential of selenium or vitamin D in lowering the antibody titer (management), likelihood of developing thyroid and other cancers, etc. One big issue is the lack of good and trustable scientific data: in a recent literature review Danish scientists have gone through 3500 research studies published in the past decades, and only 16 studies were deemed trustable enough to reach a conclusion. That is a waste of time and money for the entire society. In 2016 this should not still be happening. We should have tools to enable faster, better and cleaner data collection. We should be able to collect the data from different geographies and different people. This is one of our aims with Boost Health.
Hashimoto’s re-programs our bodies long before it is diagnosed. It starts around the time of or even before our birth. It starts attacking our thyroid, but slowly the other tissues too. This is my primary learning: Hashimoto’s is not a single organ disease; this misery does like its company.
There is a lot of good content on Hashimoto’s out there: many blogs and support pages, with some great content, helping people to learn a lot about the condition. However, when it comes to tracking, quantifying and analyzing symptoms it becomes an empty space.
How many of us are out there?
The exact number of people with Hashimoto’s is still not known. What we know is that the number of people diagnosed with it is on the increase since 1950, this doesn’t necessarily mean there are more people suffering from it, but only that it is increasingly recognized and diagnosed.
Estimates vary; some average value estimates show there are about 2% of people diagnosed, while the people that have the disease and have subclinical hypothyroidism is close to 10%, or according to some reports even 13% of the total population. For comparison, the prevalence of diabetes type 2 is around 8%.
Hashimoto’s is still not getting its deserved place in the spotlight. With the numbers being similar to diabetes type 2, which in itself is considered a health crisis, it should be taken more seriously.
Similar to diabetes, Hashimoto’s can have quite a severe and long lasting effect on our bodies and our health. It predisposes people to some conditions and diseases: diabetes, multiple sclerosis, Alzheimer’s, thyroid and colon cancer. It also lowers the chances of successful pregnancies.
How to cope with the symptoms?
Symptoms are many, and they differ in the duration and intensity, and while some might be typical for many of us (feeling tired, having headache, brittle nails, cold hands and feet), the others will show a more individual pattern (inability to eat certain foods).
With every flare up, it means that our body is reacting to something we did or failed to do (food, medication, exercise). We can experiment and learn what behaviors do good to us. We can quantify and analyze.
‘Early Prototype of the boost Health App.’
What are the plans for the app?
The app is now being finalized for beta testing on both iOS and Android, and we plan to test a few basic assumptions. This is our starting point. We have more ideas we are excited to test, always by combining science, good and trustable data and benefit for the users. Boost is a relatively small team of five, coming from different cultures, regions and educational backgrounds with a common goal: make life easier for patients suffering from chronic conditions.
For us, complexity is an attractive component of the problem. Taking on tough and meaningful problems makes us very motivated.
As a scientist and a researcher, I know how to clean data needs to be to use it for any valid research. Combining scientific rigor with the user delight is challenging, but not impossible, to achieve. I have enough knowledge and experience to attempt doing it properly and put a smile on people’s faces, but also have to mean for their health.
We need to work on recognizing early symptoms. For example, thyroid cancer prevalence has increased by almost 40% since 2010 in the US, and it is the most rapidly growing form of cancer. If detected early, the majority of thyroid cancer patients can be fully cured.
As a patient, I would like to know when and how to increase my health awareness and become more proactive in managing my thyroid condition.
As a researcher, I have several hypotheses I would love to see tested.
My dream is to build a product that would help people with a diagnosis lead a healthier life through providing them with top notch and up to date information and by converting new research results into tracking options, analytics, and insights.
At the same time, we would like to facilitate the doctor’s workflow. One of our wishes is for doctors to get live updates in the disease prediction charts and for research to have a better, more global, diverse and inclusive reach. I believe that this type of global research will give us at least an indication of how Hashimoto’s works at each and every stage, how to recognize it faster, how to successfully manage it with different treatment modalities and how to know when it starts progressing.
Currently, we are looking for beta testers of our app (we will be releasing beta very soon). We are also looking for talented and passionate people in areas of health, science, and technology.