...because there's more to living with a chronic diagnosis than what you see on the outside
What are (Invisible) Autoimmune Conditions?
Autoimmune Conditions affect and debilitate more people than heart disease and Cancer combined (AARDA) of 22 million and 9 million respectively. The challenges of understanding let alone effectively respond to Autoimmune Conditions arise from the range of symptoms that greatly reduce a person's ability to live a normal life and, because it's chronic & incurable but not fatal the impetus to research into it has suffered immensely in the past.
There are over 80-100 different types of Autoimmune Diseases currently recognised but the majority of symptoms which make it impossible for someone with an Autoimmune diagnosis to live life to the fullest stem from a number of other Autoimmune-related Diseases such as Chronic Pain & Chronic Fatigue Syndrome which is why we want to hear from you if you have an Autoimmune Condition or if you have an Invisible Chronic Condition.
What's The Invisible Health Data Project?
The scope of this research is to understand the aspects of life which have hitherto escaped medical radar; everyday life. We're calling it invisible health data solely because it's the data that hasn't made it's mark within the social & scientific community but without which, much of the research into incurable diseases has been focussed on only finding a cure rather than helping people live better lives now. By understanding the everyday symptoms that stand as obstacles, we should be able to create better social systems & encourage constructive conversations between the medical community and patients.
What will happen to my data?
We struggled with this one a lot, how do you create reliable data in a responsible way without comprising one's privacy? Which is why, we decided against storing any personal information via the survey - the primary objective of the research is to find associated symptoms with (Invisible) Autoimmune Conditions and that is all we're interested in extrapolating from the information that you give us. What's more? There's not even space for you to share personal details such as your name, etc.
You are in charge of the data we produce - once we have received considerable responses, it'll be opened up to the public to view, educate and share with family & friends in hopes of acting as content for social awareness. Any charities, research institutes or curious scientific minds are encouraged to get in touch if you feel the research could in some way benefit the wider Autoimmune community.
Right now, we need as many people living with an Invisible/Autoimmune condition to participate in the survey. Take the survey yourself or share it with someone who you think would appreciate the initiative. If you wish to learn more about the research as we progress, you might want to consider signing up to our mailing list below.