EPISODE 33: Season One Finale - Autoimmune Awareness

STACY: Hello everyone, and welcome to another episode of Autoimmune Adventures. I'm Stacy, and as always, I'm joined by my amazing sisters, Becky and Alysia. March is Autoimmune Awareness Month, and today we're going to discuss why raising awareness is so important. But first, we've got some exciting news! Autoimmune Adventures is going to level up. As we wrap up season one, we're thrilled to announce that we'll be transitioning from an audio only podcast to an engaging video experience. Expect fun interviews, visuals, and even more great content. We'll be taking a short two-month hiatus to prepare for the launch of season two in early June, it's gonna be worth the wait. Stay tuned for updates and thank you for being part of this adventure.

ALYSIA: Autoimmune awareness is a vital topic, and we are excited that we get to share more about autoimmune diseases and why they deserve more attention. For a lot of people, these conditions are invisible, but they affect millions of lives, and this month is the perfect time to shed a little bit of light on them.

BECKY: Exactly. And there's so much to discuss from understanding the diseases themselves to the importance of education, early diagnosis. And community support. We'll break it all down and explain why awareness is the first step toward change.

STACY: First, let's give a brief explanation about what autoimmune disease is. Most of you listening are probably well aware, but if you are newly diagnosed, looking for a diagnosis, or if you're a family member or friend of someone who has autoimmune disease, you might be a little unsure about the details. Autoimmune diseases are conditions where the immune system, which is supposed to protect the body from harmful invaders like viruses and bacteria, mistakenly attacks the body's healthy cells instead. This can affect any part of the body, organs, joints, tissues. Some of the most common autoimmune diseases are things like type 1 diabetes, Hashimoto's thyroiditis, rheumatoid arthritis, lupus, and multiple sclerosis.

ALYSIA: Right! And while the immune system's job is to protect the body in these cases, it becomes confused and starts to attack our body, which can lead to inflammation. It can damage our tissues, and it can cause a host of other symptoms as well. So, the tricky thing is that autoimmune diseases can look completely different from one person to the next. It can be really challenging to diagnose them because of that.

BECKY: That's right. And a perfect example is that I have lupus, and one of the most common symptoms of lupus is called a butterfly rash, which is a rash that exhibits over the cheeks and nose in the shape of a butterfly.

It's such a common symptom in lupus, the butterfly is actually used as a symbol for lupus awareness. That said, I have never, ever had a butterfly rash. Because of that, it was...it took me longer to be diagnosed with lupus. Doctors would always ask about that, and that was just a symptom I didn't have.

Similarly, Stacy and I, we have heat and sun intolerance. I also have a lot of friends that have lupus that have no sun intolerance at all, and they are relatively unbothered by the sun. So the same disease can exhibit very differently in different people.

To make it even more confusing, not only do symptoms for people with the same disease often differ, on the flip side, autoimmune diseases themselves can have similar symptoms. Which is one reason that awareness is so critical because with over a hundred known autoimmune diseases, we need to educate ourselves so we can understand how to recognize the signs and when to seek help.

ALYSIA: For us as sisters, autoimmune awareness is so important because these diseases often don't have symptoms that are obvious to an outside observer. They are known as invisible illnesses, so a lot of times people suffering from autoimmune conditions might look fine on the outside, but inside they are dealing with some serious health issues, and it's a big challenge. When someone doesn't look sick, it's easy for others to underestimate the impact of their condition, and we've all had that happen.

I know I have, and you know, "I don't understand why you can't do this," or "You don't look sick," or a lot of other really invalidating comments. Autoimmune disease is chronic, and the symptoms can be debilitating even if they aren't visible. That's why it's essential for people to understand these conditions better, so that they can support those who are affected and not just assume that somebody's fine because they look okay.

STACY: That's why early diagnosis can make a huge difference in treatment the longer it takes to get diagnosed. The harder it can be to manage the disease. Unfortunately, the symptoms of autoimmune disease can be really broad. Things like fatigue and joint pain, gastrointestinal and skin issues that overlap with a lot of other conditions.

If we can raise awareness, we can help people seek the right help sooner. If more people know what autoimmune diseases are and what symptoms to watch for, we can help catch them earlier, which can improve the outcome for people who are affected and prevent long-term damage. Now, for instance, with me, when I was diagnosed with celiac disease, it was because I went in and basically demanded that a gastroenterologist give me a test. And the reason is because I had done the footwork and I knew what was wrong with me.

But here's the problem. I did not fit the expected mold of someone with celiac disease. I had a weight problem of most people with celiac are thin. We know that isn't the case now, we know that's different, but when I was diagnosed, because I had a weight problem, they said, "Oh, well you weigh too much to have celiac. You'd be starving to death if you had celiac." And they didn't understand that it exhibits differently in different people. Just like Becky doesn't have a butterfly rash, I was not ultra thin when I was diagnosed, but it didn't change the fact that it was slowly and surely deteriorating my health.

ALYSIA: And here's where the awareness really had an amazingly positive effect on my life. Stacy went and got her diagnosis. I was dealing with my own health issues. I had no reason to think that I had celiac as well, but after her diagnosis, and chatting with her and telling her what was going on, she was like, "You should get tested for celiac disease." She spoke up, she spread awareness because her experience was not the typical experience.

And so we're family, we share some, we share some genes, and so maybe my experience wouldn't be the typical experience either. And sure enough, that's how I got my diagnosis. This is why awareness is so important. I could have spent years trying to figure out what was wrong with me, but because someone who loved me and cared about me spoke up, I went and advocated for myself and I had to do the same thing.

My doctor didn't want to order that test, "You don't have celiac disease. You have no symptoms of celiac disease." He was dumbfounded when my results came back positive.

BECKY: Awareness is huge, and another important thing that it leads to is discussing about better education. I think that any of us with an autoimmune disease could attest that although this month, March, might be autoimmune Awareness Month, it's really autoimmune awareness day for us every day, because we have to advocate for ourselves.

You know, not everybody listens. But we have to explain our illnesses and things that are going on and why we have to do certain things and it...education is just part of that. But the more people know, the more compassionate and understanding they can be toward those living with these invisible diseases, which is part of the reason the education is so important.

ALYSIA: Exactly. And awareness also helps with policy changes. The more people that are advocating for autoimmune disease, the more likely we are to see improved healthcare policies, like better funding for research and access to treatments. And right now most autoimmune diseases don't have cures, and many treatments are just about managing the symptoms. But with more attention, we can push for better solutions.

STACY: And that's. Why we are touting awareness today. Another benefit of raising awareness is it creates a supportive community, and we've talked a lot about community. In fact, the special episode we put out late last week was about having a good support system and having people who can help you.

When people understand what someone with an autoimmune disease is going through, they are more likely to offer support, whether that's emotional or understanding in the workplace, or just in general, kindness. It makes a world of difference because as we've mentioned earlier, these diseases are isolating.

When awareness spreads, it's easier to connect with other people who are going through similar struggles, and that's why online communities and support groups and even just having conversations with family and friends can really give you a sense of belonging.

BECKY: So we've talked a lot about why awareness is so important, and now you might be asking the question about what can you do to help raise awareness? Well, one of the easiest things is to share information on social media. There are a lot of campaigns, especially during Autoimmune Awareness Month, that you can support by sharing posts. Articles, personal stories, you just sharing a fact or an article about autoimmune diseases can help educate your whole network.

ALYSIA: And I think people really respond when others are vulnerable and share their experience about that. It doesn't have to be a cheesy thing you throw up on social media that nobody really wants to pay attention to. When you get vulnerable and you share your experience and how it's impacted your life, people respond to that. I would say another way is that you can donate to research organizations. Like the American Autoimmune Related Disease Association, it's A-A-R-D-A or other places that are dedicated to finding better treatments and cures for autoimmune diseases. Supporting these kind of groups is going to mean that you're supporting progress in medical research.

STACY: And as simple as it is, having a conversation with someone is a great way to raise awareness if someone you know doesn't understand autoimmune disease. Take a few minutes and educate them. You don't have to get technical with them. It's fairly easy to explain, "I can't be in the sun because I have lupus, and it's an autoimmune disease that causes me to be really sun intolerant," and that may be all I have to say. It doesn't have to be a long-winded, scientifically based explanation. In fact, if it is, people will probably cease to care about what you're saying.

They'll tune it out and then you will not have accomplished much. So instead, just keep it short and sweet, little bits of information here and there, and you don't have to be an expert. Just start by talking about your own experience and share what you've learned.

BECKY: And honestly, I think a lot of times sharing your own experiences, people are more likely to listen to than if you're just throwing out general research.

Another thing. That you can do to raise awareness is get involved in events both virtually and in person. A lot of cities hold walks, fundraisers, or awareness events. During autoimmune awareness month or throughout the year, a lot of different autoimmune diseases have their own awareness week or month or day, and a lot of things like bike rides and runs and things like that are out there.

Obviously, a lot of us that have autoimmune disease are not really up for a 5K, especially if it's on a sunshiny day, for those with lupus. But what's great is a lot of these, most of these organizations have, a lot of times they call it "sleeping in for the cure," where basically you can still take part virtually in helping raise the money for the cause if you're physically not able to go and actually do the event. If you're up for the event and you can do it, do it. I, I've had some where it was early enough in the day I was able to pull it off, and you better believe I wasn't running. I was just walking, but it was still really enjoyable. So if there's anything like that, there's events and getting involved and events can be both fun and a great way to help people learn more about autoimmune disease.

ALYSIA: So as we're kind of wrapping up today's episode, we wanted to encourage all of you to take at least one action this week to raise awareness. That could be sharing something on social media. We would absolutely love if you shared this podcast, you know, doing something to support a cause, or simply starting a conversation about autoimmune disease with somebody.

And you don't have to be an extrovert to do this. You could start small, start within your family, start within your coworkers, your circle of friends, your church communities, whatever it is. And you don't have to be preachy. Like Stacy said, people tune out, they don't wanna hear all the dirty details, they don't want the scientific explanation.

You just keep it simple. You don't have to be an extrovert. Open your mouth and just share your experience, and don't be whiny either. 'cause nobody likes whiny. I know that could be hard sometimes if we're having a bad day that loses people's interest real quick.

STACY: I think we need to remember that the people who care about us, they really do want to know. They don't wanna know all the graphic details, but they do wanna know what they can do to help our lives be better. Every bit counts. Every bit of awareness we raise with our friends, our family, the people we come across in the grocery store who ask why you're buying certain things. That happened to me last week.

I was getting something at the grocery store, and she's like, "I've never eaten that before. Is it good?" And I said, "Well, it's really great for my lupus. It helps me deal with my sun problem." She's like, "What sun problem?" And it gave me a chance. To just quickly explain without it getting too in depth, and she's like, "I had no idea. I have a cousin that has lupus. I didn't know." And I said, "Well, not everyone with lupus has this problem," I said, "but a great number of them do." It gives you a chance to improve the lives of the people that are living with autoimmune disease and maybe aren't gutsy enough to say anything. Be brave. Put yourself out there a little bit.

BECKY: Thank you for tuning in today. We're glad you joined us. We hope that this episode has helped you feel a little more inspired on how you can spread the word about autoimmune diseases, not just during Autoimmune Awareness month, but all the time. And we hope that you'll like and subscribe and share.

And don't forget to follow us on Facebook, Instagram, and LinkedIn. You can also visit our website @autoimmuneadventures.com. For more resources. We have a list of books, websites, and support groups in our show notes for this week. We thank you for coming on our journey with us. And we look forward to seeing you in our new and improved video version of season two, and we'll be back in a few months.

Remember, you're worthy of joy. Your disease does not define your life. You do.

Resources on Autoimmune Diseases and Awareness

Books:

1. "The Autoimmune Solution: Prevent and Reverse the Full Spectrum of Inflammatory Symptoms and Diseases" by Dr. Amy Myers

   • This book offers a comprehensive guide to understanding autoimmune diseases and how to manage them through diet, lifestyle changes, and medical treatments.

2. "The Immune System Recovery Plan: A Doctor's 4-Step Program to Treat Autoimmune Disease" by Susan Blum, MD

   • Dr. Blum presents a holistic approach to managing autoimmune conditions through nutrition, detoxification, stress reduction, and immune system support.

3. "The Autoimmune Protocol: A Detailed Guide to the Healing Diet" by Mickey Trescott

   • This book dives into the Autoimmune Protocol (AIP) diet, a way of eating designed to help manage autoimmune diseases by reducing inflammation and healing the gut.

4. "The Paleo Approach: Reverse Autoimmune Disease and Heal Your Body" by Sarah Ballantyne, PhD

   • A detailed guide to the science behind autoimmune diseases and how lifestyle and dietary changes (particularly the Paleo diet) can aid in recovery and symptom relief.

Websites and Organizations:

1. American Autoimmune Related Diseases Association (AARDA)

   • Website: https://www.aarda.org/

   • AARDA is dedicated to providing education, advocacy, and research funding for autoimmune diseases. Their site includes helpful resources for those affected by autoimmune conditions and those looking to learn more.

2. National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)

   • Website: https://www.niams.nih.gov/

   • This government organization provides detailed information on autoimmune diseases, their symptoms, treatments, and ongoing research.

3. Autoimmune Disease Association (ADA)

   • Website: https://www.autoimmune.org/

   • ADA offers a wealth of resources, including articles, educational tools, and support for people living with autoimmune diseases.

4. The Lupus Foundation of America

   • Website: https://www.lupus.org/

   • Focused on raising awareness for lupus, this foundation offers educational materials, advocacy programs, and resources for those affected by the disease.

5. The National Multiple Sclerosis Society

   • Website: https://www.nationalmssociety.org/

   • A leading organization for those living with Multiple Sclerosis (MS), offering a variety of resources, support groups, and information about treatment options and research.

6. Celiac Disease Foundation

   • Website: https://celiac.org/

   • The Celiac Disease Foundation provides resources for people with celiac disease, offering educational materials on the condition, diagnosis, and how to live gluten-free.

Medical Journals and Research Studies:

1. PubMed - National Library of Medicine

   • Website: https://pubmed.ncbi.nlm.nih.gov/

   • A database of scientific research articles on autoimmune diseases. You can search for studies, reviews, and clinical trials related to specific autoimmune conditions.

2. Journal of Autoimmunity

   • Website: https://www.journals.elsevier.com/journal-of-autoimmunity

   • A peer-reviewed journal focusing on clinical and experimental research on autoimmune diseases. It’s an excellent resource for up-to-date medical studies on autoimmune topics.

3. The Autoimmune Diseases Journal

   • Website: https://www.springer.com/journal/104

   • This journal publishes research on autoimmune diseases, including clinical studies, basic science, and therapeutic advances.

Support Groups and Forums:

1. Reddit - Autoimmune Diseases Community

   • Website: https://www.reddit.com/r/Autoimmune/

   • A supportive online community where people with autoimmune conditions can share their experiences, ask questions, and offer advice.

2. MyAutoimmuneTeam

   • Website: https://www.myautoimmuneteam.com/

   • A social network for people with autoimmune diseases, offering a platform to connect, share experiences, and find support from others living with similar conditions.

3. Chronic Illness Support Group (Facebook Group)

   • Search on Facebook: "Chronic Illness Support Group"

   • A Facebook group dedicated to offering emotional and social support to people living with chronic illnesses, including autoimmune diseases.

Helpful Articles and Guides:

1. "What Is Autoimmune Disease?" - National Institutes of Health

   • Website: https://www.ninds.nih.gov/health-information/disorders/autoimmune-diseases

   • A detailed guide from NIH explaining what autoimmune diseases are, how they develop, and their symptoms.

2. "How to Manage Autoimmune Diseases: A Guide" - Healthline

   • Website: https://www.healthline.com/health/autoimmune-disease

   • This article covers how autoimmune diseases are managed, with information on treatment options, lifestyle changes, and coping strategies.

3. "Raising Awareness for Autoimmune Diseases: Why It Matters" - AARDA Blog

   • Website: https://www.aarda.org/raising-awareness-for-autoimmune-diseases-why-it-matters/

   • This blog post explores why awareness for autoimmune diseases is so essential and provides tips on how to get involved in advocacy.