One of a few major goals of the Autoimmune Registry is to be a trusted resource for researchers, doctors and patients on every autoimmune disease. Today we begin the task of creating a Profile page for each autoimmune condition.
Our first spotlight is on Addison’s disease.
Our disease profiles give you a thumbnail picture of Addison’s including:
Names. Though it sounds simple, naming autoimmune diseases is not always simple. Many diseases have 2 names, one from the scientist who first recognized the disease and defined it, and another that describes the underlying mechanism of the disease. Addison’s disease was discovered by Thomas Addison in 1855. But it is also known hypocortisolism and, more specifically, autoimmune hypocortisolism, because that more accurately describes the disease from a medical perspective.
Patient Groups: The Autoimmune Registry is not a patient advocacy or support group. But we do collaborate with these groups and want to make sure patients know what resources are available to help them. Any non-profit group that focuses on the profile disease will be listed. If you think your group should be listed, please contact us.
Bloggers: Hearing how other people with your disease cope with life can be helpful and inspiring. We list all bloggers focused on the disease who have at least one blog post within the past 12 months. If you find one we have missed, please let us know.
Prevalence: Prevalence refers to the number of people that we believe are currently suffering from this disease. Our estimates for Addison’s are between 16,000 and 80,000 people in the US, of which 75% are women. This is a common pattern for autoimmune diseases. All of our estimates come from papers published in scientific journals, government websites (like those from the National Institutes of Health and other organizations), and academic institutions. Links to the sources can be found on the Profile Page.
We also aim to provide other miscellaneous data, including average age of onset, a list of symptoms, and more. The list of symptoms for many of these diseases is vague. So if you are a patient or medical professional and think that we are missing a symptom, please let us know.
Our disease Profiles will also contain Additional Resources, including links to Clinical Trials, links to the websites we used to obtain our data, and a link to PubMed, a national database of scientific publications, so you can quickly find scientific evidence.
If you live with Addison’s disease, we would love to hear your story. Feel free to email firstname.lastname@example.org if you wish to contribute a guest blog post about life with Addison’s. In the meantime, please visit the National Adrenal Diseases Foundation for more information and check out our Addison’s fact sheet, here.