I had the pleasure of interviewing the beautiful and talented Marisa Zeppieri, founder of the non-profit Lupus Chick! Marisa was one of our keynote speakers for the UMass Lupus Day 2016. We've been friends ever since, and I'm delighted to pass on her knowledge and wisdom to our community.
1. Briefly tell us about yourself and your background. I’ve been a health and food journalist for over 12 years, in addition to running LupusChick.com, which I founded about 11 years ago. We started as a blog and eventually grew into this large autoimmune community that reaches about a half million people per month. We also became a nonprofit a few years ago. Through LupusChick, we have been able to educate and support patients and their families that have lupus and other overlap autoimmune diseases. Last, I am an author. In 2013, I published Lupus: Real Life, Real Patients, Real Talk and I just signed a memoir book deal that is scheduled to release during the holidays of 2020 (which I am over the moon about!).
2. Please share a little about your fight with lupus.
I was officially diagnosed with lupus 18 years ago when I was 23 years old. I had just suffered pretty severe injuries from a vehicular event in which I was hit by a truck as a pedestrian. As I recovering in the hospital, I started to express many different symptoms – symptoms I had had over the years here and there – but this time they all came out at once. They included fever, rash, mouth sores, joint pain, and blueish fingertips. Being in the hospital, I was able to get seen by a variety of doctors and had a diagnosis of Systemic Lupus in just three weeks. While that seemed fast, I had been having these issues since I was about 9 years old and probably should have been on treatment at a much younger age.
Since then, my journey with lupus has been up and down. I’ve never really been in a remission per se, and everyday I deal with some type of struggle, whether it is fatigue, pain, rash, etc. When the disease is really active, it tends to attack my blood, which has caused things like small strokes and blood clots over the years. Even with all of the difficult things it can bring, I try to focus on enjoying my good days, meeting and educating people through LupusChick, and trying to be gentle and kind to my body as it has been through so much.
3. Which Eastern and Western therapies have you tried? Which ones worked for you? (Ann and I were curious about your salt cave experience, but any insight would be great to hear about. Also anifrolumab just met phase III endpoints, would love to hear your take on that.) Over the years, I’ve really had the opportunity to try a variety of treatments that fall into medication categories and also alternative or complimentary therapies. Antimalarials, steroids, and Imuran were/are my main medication options that seemed to work best for my body, along with IV iron for my blood (my body has never been able to absorb it through pill form for some reason).
In addition to that, I also work with nutritionists and functional medicine doctors who have helped me figure out my food allergies (with the help of an ENT), and get me on an anti-inflammation protocol with food and diet and different supplements that have really helped. Massage and acupuncture have also worked during different seasons of my life. I also love restorative yoga, as most other exercise is too intense and difficult for me, but this type of yoga seems to calm my body. Last, when I am with my family near NYC, I visit a salt cave regularly and that has been a huge help for my fatigue due to the lupus, in addition to asthma and allergy issues I deal with. I’d recommend it for anyone with respiratory issues or people who are dealing with fatigue and low energy.
As far as Anifrolumab, I think we are in an exciting time and overdue time when it comes to lupus patients and medication options. Because each mediation option we currently have doesn’t work for every single patient, the more medications brought to market, the more possibilities there are for patients.
4. There is a push for treating the whole patient, including lifestyle, nutrition, and exercise, especially in light of newer microbiome studies indicating there is gut dysbiosis in lupus patients. Any advice for our readers how to tackle such big adjustments?
Working on getting my gut in order through the help of my functional medicine doctor and some comprehensive stool tests was honestly one of the best things I ever did for myself. I had so many gut issues and it didn’t matter what I ate, or what diet I tried, or what food I restricted, I had serious issues. Through some testing we were able to determine which bacteria in my microbiome were way off range in one direction or another and through specifically targeted probiotics, supplements, and fermented foods, I was able to see a major difference in just a few weeks. I’ve been following this protocol for over a year and I not only feel better, but I have been able to add in foods that I hadn’t been able to eat for many years.
As far as exercise, which I briefly touched on before, yoga is my favorite. I can do it at home, and even if I can only handle 10 minutes or 30 minutes, I do it at my own pace and it helps keep me tone, flexible, and relaxes my mind and body. I’d recommend anyone who has lupus – when they aren’t in a flare, and if their doctor says it is ok – that they find some light exercise just to keep them active and moving. It could be just walking in place in your home, stretching, some light swimming or water-based physical therapy. There are a lot of options that aren’t high impact but you have to test them out and see what is feasible with your current level of strength and energy.
5. You have accomplished so much, any particular experiences you would like to share? Honestly, everything that has happened with LupusChick has been an incredible blessing. We have been able to be on television shows and educate people about lupus, we have given away 7 partial college scholarships so far to young women with lupus, I get to travel and speak about chronic illness and during those travels I meet the most amazing warriors who are living their best lives despite being sick. It is very inspirational and I feel blessed. I started LupusChick as a little blog and thought maybe just a few people would read it here and there and now we literally reach hundreds of thousands of people per month, and are helping to change the conversation on chronic and invisible illnesses.
6. Any parting words of wisdom and encouragement to share with our readers? I would just encourage people to be authentic and transparent when sharing their story (if they are comfortable sharing it in the first place). I used to put a lot of boundaries on how much I shared and people weren’t getting the full impact but once I decided to put myself out there and be completely honest with my struggles, this entire world just opened up. People started to relate and share they were going through something very similar and lives started to be impacted. Your story can help someone who is at the beginning of their journey, so be proud of how far you have made it and share what you have learned about living well with a chronic illness.
You can learn more about Lupus Chick here: https://lupuschick.com/
