As a novel virus, COVID-19 has researchers working overtime to learn more about the virus and how it affects different sectors of the population. The more we know about the virus, the better we are able to not only treat it but protect the most vulnerable populations. All of this leads us one step closer to the development of an effective vaccine. One sector of the population that researchers are making strides to learn more about are those with autoimmune disorders. The Autoimmune COVID-19 Project recently launched and is dedicated to learning more about how COVID-19 affects this particular sector of the population by engaging directly with the patients. Let's take an in-depth look at this powerful project and how you can become a part of it.
What are Autoimmune Diseases?
Before we dive into the nitty-gritty of the project let's recap what autoimmune diseases are for those who are just becoming acquainted with the disease. Ideally, your immune system protects you from harmful, foreign substances like bacteria and viruses by attacking these organisms and destroying them. However, for individuals with an autoimmune disease, their immune system also attacks healthy cells. The body is unable to tell the difference between healthy cells and foreign invaders so your immune system releases proteins called autoantibodies that destroy both types.
There are many different types of autoimmune diseases. Some disorders only target one particular organ. Other types affect the entire body. At this point, there is not a cure for autoimmune diseases. Treatments available can only manage the disease and relieve associated symptoms. Researchers and health organizations such as the CDC have placed those with autoimmune disorders as being in the high-risk category when it comes to COVID-19.
Why are Individuals with Autoimmune Disorders Considered High-Risk?
Those who have been diagnosed with an autoimmune disorder, even if they take medications are considered to be immunocompromised. This means that their immune system has been weakened, and they are not able to fight off infections as well as the general population. It is important to clarify that those with autoimmune disorders are not more susceptible to contracting the virus. They are more likely to have severe, life-threatening complications if they do come down with COVID-19.
Further research is needed to understand the effect that the virus has on the overactive immune systems of those with autoimmune disorders. Likewise, researchers are still striving to determine how the COVID-19 virus is affected by overactive immune systems. Organizations and foundations are making great strides to help answer the unknowns of the coronavirus so that people who contract the virus that also have an autoimmune disease can be better treated. One such organization is the Global Healthy Living Foundation.
What is the Autoimmune COVID-19 Project?
The Global Healthy Living Foundation recently launched the Autoimmune COVID-19 Project. The mission of the project is to understand the primary concerns as well as the behaviors of patients who are living with an autoimmune disorder during this pandemic.
How Will the Project Be Achieved?
The foundation will achieve its goal through surveys through the collaborative efforts of:
- Four patient-powered research networks (Patient-Powered Research Networks)
- Academic partners
- Various other patient organizations
What Do you Need to Know About the Autoimmune Research Collaborative?
As mentioned above there are 4 patient-powered research networks. Those with an autoimmune disease or a related condition are encouraged to join the network or networks that best fit their situation:
- Arthritis Power — Patient-centered research registry for those who have joint, bone, or inflammatory skin conditions
- IBD Partners — Community for those who have been diagnosed with inflammatory bowel disease as well as researchers of the condition
- iConquerMS — Non-profit organization that develops and shares resources with multiple sclerosis researchers around the globe
- VPPRN — Strives to change how clinical research in vasculitis is conducted by communicating directly with those who have the disease, researchers, and health care providers
These 4 patient-patient powered research networks are graciously supported by patient organizations including:
- Accelerated Cure Project
- Chron's & Colitis Foundation
- The Vasculitis Foundation
The project is fortunate to furthermore supported by affiliated academic institutions including:
- The University of Alabama at Birmingham
- The University of North Carolina at Chapel Hill
- The University of Pennsylvania
Who Can Participate in This Project?
There are two basic requirements to be able to participate in the study. The first is that you must reside in either the United States and its territories or Canada. The second is that you must be 19 years of age or older, except if you reside in Puerto Rico, in which case you must be at least 21 years of age.
In order to provide the most valuable information, it is important to choose the network that best fits your current medical situation. The goal is to obtain accurate information from those who currently live with these conditions.
Will My Answers Remain Confidential?
Rest assured that your answers on the surveys will not be made available to the public in any way. All information will remain private and confidential. The answers are purely for the advancement of research in order to understand how to better protect those with autoimmune diseases and related conditions. It is important to be as honest as you possibly can with all your answers.
This ground-breaking project is close to Paleo Angel's heart, as founder, Amy Ma lives with an autoimmune disease herself. Amy knows first hand that the best way to manage autoimmune diseases to be proactive and strive to prevent as many flareups as possible. This is why she created the Autoimmune Protocol diet (AIP). This diet is a spinoff of the famous Paleo diet, yet more restrictive. The goal is to reduce overall inflammation in the body, which in turn helps to reduce the occurrence of flareups. Join the Paleo Angel community for helpful tips on following the autoimmune protocol diet and of course ordering your favorite flavor of the infamous Paleo Power Balls!