February is Black History Month!

In honor of Black History Month, the Autoimmune Registry is focusing on the intersections between health and identity. We have collaborated with Cynthia Adinig, a long-COVID and autoimmune disease advocate, to share her experience with navigating long-COVID and her autoimmune diagnosis as a Black woman:

Four years into my battle with long-COVID, it feels like many of us, especially women of color, are still shouting into the void, trying to get noticed by a healthcare system that seems to keep missing the mark. As a Black woman, my fight just with long-COVID has been all kinds of extra. There are so many of us who've been brushed off or not heard by doctors, who've had to fight tooth and nail just to be taken seriously. It's exhausting, and it's wrong.

There's increasing research that COVID infections might be waking up or exacerbating undiagnosed autoimmune issues in some of us. In my journey to understand the many flares of symptoms I've been experiencing, I'm closely investigating several autoimmune conditions that might be at play, such as Sjögren's, characterized by significant dryness and profound fatigue.

The similarities between long-COVID and autoimmune diseases are too big to ignore and given the inequitable impact of COVID on the Black community, we need to be aware of the full scope of what could be making our days so much more of a struggle. The deep tiredness that never goes away, the pain that seems to have no source, the fog that clouds your brain, making it hard to think or remember. The similarities make it hard to know if it is one, the other, or both. However, some signs could point to something more, like an autoimmune condition:

1. New Symptoms: If your symptoms evolve or new ones emerge despite treatment, it could indicate that there's more at play than your current diagnoses account for. Autoimmune diseases often present in ways that overlap with MCAS, MECFS, and dysautonomia but require different treatment approaches.

2. Recovery Plateaus: Hitting a plateau in your symptom management or finding that your medications have ceased to be effective is a sign that your condition might need to be re-evaluated. This could indicate the development of another condition or the need for a different treatment strategy.

3. Out of The Box Symptoms: Autoimmune conditions can present a wide array of symptoms not exclusively tied to post covid associated conditions such as MCAS, MECFS, or dysautonomia. For example, significant joint swelling, skin changes that do not align with allergic reactions, or systemic symptoms like fever and weight changes could suggest an autoimmune component.

4. Holistic Review of Your Health History: Sometimes, the key to understanding your current health challenges lies in a comprehensive review of your entire health history, including any previous autoimmune issues, family history, and environmental factors. This holistic approach can uncover connections that might have been previously overlooked.

Unfortunately, the Black community experiences unique challenges when it comes to healthcare. Cynthia emphasizes the importance of sharing your story and advocating for yourself in the autoimmune space: "We can shed light on these disparities and work towards a future where our health concerns are met with the urgency, care, and respect they deserve."

To support the Autoimmune Registry, please join our registry or share it with a friend who has an autoimmune condition. Donations are also greatly appreciated!