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‘Raising Awareness About Autoinflammatory Conditions on a Global Scale’

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You may be familiar with autoimmune diseases, such as rheumatoid arthritis and type 1 diabetes. After all, autoimmunity has been known well publicised since the early 1900s. However, a less understood chronic condition in the medical world is something similar to it, the autoinflammatory condition.

Autoinflammatory diseases are different from autoimmune diseases — though they’re the same in the sense that the immune system, which should be fighting against viruses, bacteria and infection, is attacking the body instead. Adrienne Dellwo discusses how the difference between the two lies in the part of the immune system that’s malfunctioning. In autoimmune disorders, the adaptive immune system is involved. This part of the immune system forms antibodies to attack and destroy a certain type of cell. Meanwhile the innate immune system is what malfunctions with autoinflammatory conditions. Instead of autoantibodies, cytokines attacks the body and can lead to inflammation.

The lack of knowledge on autoinflammatory diseases can be seen with the first cases being recorded just over 20 years ago, according to The Conversation. The symptoms at the time seemed like inflammatory reactions, though doctors could not trace them back to infections. The condition is also called ‘periodic fever syndrome’ due to the fever and inflammation involved.

Autoinflammatory conditions cannot be cured, although treatments can be used to relieve symptoms. Unfortunately, because these chronic conditions are rare, it can be hard to develop treatments — as a drug that works for one person may not work for another. The biologics used in the drug are also expensive, not to mention they can also cause serious side effects, such as infection.

A feature on RACC-UK shares how it’s like living with an autoinflammatory condition, relaying how it can be very disruptive to everyday life. As these conditions are mostly genetics, people who have them may experience symptoms, multiple admissions, and even surgeries since birth. It may also take a long time for doctors to correctly diagnose the disease. There will be frustrations related to treatment and constant flare ups of the condition, however they can still find a way to lead their lives.

Because these chronic conditions make up a new category, there are autoinflammatory diseases that are still being discovered. An example of what we know is the Hyper IgD syndrome, or HIDS. This condition is caused by a recessive gene mutation of an enzyme that’s involved in cholesterol synthesis. Attacks can last for days, starting with chills and fever, but can also be accompanied by skin rashes and headaches. Flares can be triggered by trauma or stress. Meanwhile, the TNF Receptor-Associated Periodic Syndrome, or TRAPS, causes fever episodes with no reason — though they may be triggered by various situations, from injury to hormone changes.

Despite these many factors surrounding autoinflammatory diseases, writer James Gonzales assures us that they’re not something to be scared about if they can be diagnosed and managed accordingly. After all, the chances are that we are already experiencing, or will experience, a type of chronic condition in our lifetime, such as asthma or cancer. As such, the care and support we give to people with the more common conditions should all the more be given to those experiencing the rare autoinflammatory diseases.

An easy way to support them is to educate yourself on the specific condition they have. You can also encourage them to reach out to people with the same disease, or even those with autoinflammatory conditions in general. You can use our ‘Resources for Patients and Families’ to help you understand autoinflammatory diseases.

Written exclusively for RACC – UK

by Ashley Crawford

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