Several weeks ago, I attended a discussion surrounding Primary Biliary Cholangitis (PBC). The event took place during the American Association for the Study of Liver Disease’s (AASLD) Liver Meeting, and it raised the importance of advocacy, education, and awareness of rare autoimmune diseases during a conversation with an inspiring group of organization leaders, patients, advocates, and doctors.

One particular patient shared her journey with PBC, admitting that she saw different doctors for seven years complaining of fatigue and unbearable itchiness (two discrete symptoms of PBC), and had doctors consistently dismissed her complaints as allergy symptoms. In the meantime, her liver health was progressively declining without proper monitoring or care. She expressed that during this period before diagnosis, her ability to cope with the consequences of her unknown disease, both mentally and physically, became exponentially more challenging.

This patient story shines a light on four themes I gathered from the discussion.

• Education and awareness of PBC and rare autoimmune diseases at large is lacking for healthcare providers, patients, and the general population. It is important that patients understand their personal limitations, treatment plan and options for support services. Additionally, increasing awareness for rare autoimmune diseases is a significant overarching and long-term goal. To achieve this goal, Health communicators can consider providing disease-specific guidance materials for healthcare providers and patients, hold conferences and plan meetings with education and awareness in mind.
• Receiving the correct diagnosis is critical, but not always simple. Healthcare providers should be more aware of how to diagnose correlating side effects in order to guide patients toward an effective treatment plan. For PBC patients, this does not just include hepatologists, but rheumatologists, allergists, and other doctors must be targeted as well.
• Emotional support services provide patients with safe environments to learn from each other and lean on each other, and have proven to be uplifting for the patient’s comfort and ability to cope with their disease. Of course the patient’s medical needs are primary, but the emotional stressors that come along with having an autoimmune disease, and the social isolation that may follow, should not be brushed away. Healthcare communicators have an opportunity in this space to make a difference by hosting more patient-focused events and being mindful of the patient’s coping strategies.
• Technology can fill the education gap, and should be heavily utilized. Organization leaders in the PBC arena spoke of the positive impact that webinars, Facebook chats, text messaging programs, and videos have had in bringing people together in attempt to bridge the education barrier.

To get a better idea of the difficulties of battling a rare autoimmune disease, I invite you to imagine your body becoming the ultimate aggressor to its own being. This is a scenario where your physical cells and organs—the only things that really, truly belong to you—are attacking you from within.

As someone who suffers from a rare autoimmune disease myself, I can confirm that the above sentiments are incredibly important. I wish more than anything that I did not understand the distress of going from one doctor to the next with no tangible solution for my symptoms, or the feeling of defeat when I wake up every morning, glaring at the lengthy line of orange pharmacy bottles by my bed. This, unfortunately, is my reality, and the reality of most people who suffer from one of the 80 different types of known autoimmune diseases.

Thankfully, many people and organizations dedicate their lives to the medicine, education, and awareness of rare autoimmune diseases, making the path for those who tread its shaky ground a little less scary.

Niv Avneri is an intern at JPA Health and a senior at American University studying Public Relations and Strategic Communication