A conversation with lupus nephritis advocate Carly H.

In our work, we're honored to speak with advocates about their lived experiences, why they participate in research, and how they engage with their communities. Our partners at the Lupus Research Alliance graciously connected us with Carly H., a lupus nephritis advocate from Brooklyn, New York. We were able to chat with Carly over Zoom about her diagnosis story, why it’s so important to have a strong support system, and why participating in lupus clinical trials is critical for advancing research. Read the full conversation below.

A conversation with lupus nephritis advocate Carly H.

Antidote (A): When were you diagnosed with lupus nephritis? 

Carly H. (CH): I was diagnosed with lupus nephritis back in 2011. At the time, I had gone to the beach with friends for my birthday. When I came back home, I had this incredible sunburn that lasted for over a week. I happened to have a friend who was a dermatologist, and I was like, "Hey, what is going on here? Can you tell me something about it?" With his cell phone flashlight, he looked at my face rash and began asking me other questions about joint pain, swelling in my ankles, fatigue, and a bunch of other things that I could not have possibly known were related. 

At the time, I was working full-time, going to school, doing research, volunteering, a bunch of things that'll make you tired and make your feet and knees hurt. I kind of had no idea that they would be related to my face rash. My friend helped me connect the dots. He said, "I think you may have lupus." Eventually, we did end up getting me a formal appointment. I took some tests and was lucky enough to receive a diagnosis within a few weeks. I know that my story is not the same as many people who go through this journey. It's important to highlight this because most people have to wait a very long time before they receive a diagnosis. Of course, I wish it were not that way, but I am grateful that for me, I did know someone who was able to assist.

A: How has lupus changed your life? 

CH: Lupus has changed my life in several ways. As we know, it changes you physically, but it also changes you emotionally, including going through stages of grief, going through anxiety, and experiencing a bunch of other things related to having a chronic illness while adapting to a change that is suddenly happening. 

It changed my career trajectory. At the time, I was going to school, I was doing research, I was working, and as I was almost graduating, I was thinking that I'd be applying and going to medical school. 

However, lupus had other plans. I wasn't able to go to medical school as I had originally anticipated. Because of complications related to my illness, I ended up in the hospital a few times. At one point, I had to go on chemo. 

Unfortunately, I did not realize many parts of my aspirations and dreams at that time. I will say that gratefully over the years, I have been able to get a lot of things done in relation to the dreams that I had set for myself. I still do research and still ended up in this field. It came a little later in life, but it did still come. I think I've been lucky there.

My current research is focused on COVID-19. Prior to that, I was beginning a project specific to lupus. I can't go into the specifics, but I do intend to be working and doing research in the lupus space for the foreseeable future. That, along with my other research goals, I think they're going to work well together.

A: Why is it so important to have a strong support system that you can rely on with lupus? 

CH: It’s very important to have a support system when going through a chronic illness, such as lupus and lupus nephritis, simply because there are so many unknowns and you're going to need a variety of people to help you get through each stage of that. 

This takes many forms, from in-person and virtual support groups to your family members, your friends, or random strangers who just happen to have the same disease that you do. It is important that you have people near you. If it were not for my amazing support system, I definitely would not be where I am today and be as well-adjusted in terms of my illness as I am. I do recommend, if nothing else, reaching out to virtual support groups or online communities. That has been helpful, because you're able to get a wide range of opinions on things, as well as get as much information from across the globe as you possibly can.

Using social media as a tool is extremely helpful, too. There are a lot of physicians and healthcare professionals that are online and looking to assist patients (of course, no medical advice or anything like that, but just general information about your illness). This can be comforting because a lot of people upon diagnosis don't know much about lupus or lupus nephritis. So, it is helpful to have that type of assistance online to build a good support system. This is especially helpful for those who don't physically have a support system nearby. This disease can feel isolating a lot of the time. It is extremely important that a patient can reach out to someone else online and get that kind of support.

A: What kinds of advocacy groups and initiatives are you a part of?

CH: Three other amazing people and I run a community organization called LupusChat, an organization created to amplify caregiver and patient voices within the healthcare sector and help build meaningful relationships fostering dynamic change between the lupus community and healthcare professionals. You may have seen us online or in person at many conferences! 

I also do advocacy work with the Lupus Research Alliance, Lupus and Allied Diseases Association, and Lupus Foundation of America. It is my belief that working with all lupus organizations, and especially local chapters, is extremely helpful in helping to bring the community together, break down silos within healthcare, and just get the messages across. Through the work that I do within lupus organizations, I am an advocate for clinical trials and clinical trials participation because it is extremely important that we have patients participate in these trials. We can't know what's going to help us or what causes a certain thing unless we are the ones actively participating in the research. You need a variety of types of people in order to participate so that treatments can help a variety of people.

I’m also currently doing work with the COVID-19 Global Rheumatology Alliance, as well as the NIH COVID-19 Treatment Guidelines Panel

A: What kinds of trials and/or research studies have you participated in? Why did you decide to volunteer? 

CH: The thing about research in general is it doesn't always have to be a clinical trial. You can do other types of research, and I feel like I've kind of done them all. I've participated in a number of trials. In respect to the clinical trials that I've done, I did one specific to lupus nephritis, which was really great. It was a two-year trial that wanted to see specifically how a medication impacted black women with lupus nephritis. That was really an interesting one to me and one that I eagerly wanted to participate in, because, in order to find out if certain treatments are effective, the people that we're trying to see who it affects have to be the ones to participate.

I always advocate for underserved communities to participate in clinical trials. However, I also advocate for health literacy and education around clinical trials. I speak often at workshops or conferences where I really champion educating patients and their care partners so that everyone is informed and an informed decision/consent can be made. This helps further research goals.

A: What is something you want the lupus community to know about clinical trials?

CH: If there is one thing that I want to convey to the lupus community as a whole with regards to clinical trials, it’s this: It is very important to do your homework on a trial or any type of health-related research that you're considering participating in. If you have questions, be sure to ask the study team(s) so that they can better explain the process and endpoints to you. It’s always helpful for me to see exactly what they are looking for and to see and determine whether or not I want to assist with helping them reach that goal.

One thing that I find to be important is telling patients to ask any questions that they have. Don't feel bad about wanting to be educated about a trial or research study, and to get as much information as possible so that you can make an educated and informed consent to participate in a trial. That's important.

I do understand that there is a lot of medical mistrust because of history (and not just history, but things that are presently happening). I think if we are not talking about those things, we can never move beyond them and come to a place where, even with those things in mind, we can learn more and make educated guesses or choices about the research that we'd like to participate in. I think it's important to talk about the issues, talk about our fears, and have our questions answered. I think that's what I'd like to convey to patients. Make sure you're getting all the information you can, because it's really an important decision and it's a decision that only you can make.

Advocates like Carly are helping elevate patients’ voices. One other way that patients can make a difference is through participating in clinical trials. New studies are testing the safety and efficacy of drugs for lupus, but they can’t progress without volunteers. Individuals living with lupus are needed to help move this science forward.