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Aepios: An Online Network for Patient Empowerment & Connection

Aepios: An Online Network for Patient Empowerment & Connection

An Introduction to Aepios & Christina

I am excited to have Christina DeSerio, CEO of Aepios, with us today on the blog! Christina is a neuroscientist who also lives with several chronic illnesses.

Aepios is an acronym that stands for: An Empowering Place to Interact and Openly Share. It is a support network for chronic illness patients that’s easily accessible online.

Digital platforms such as Aepios always warm my heart. I don’t think there can ever be ‘too many’ resources or connections, when it comes to chronic illnesses. There’s still so much we don’t know about them, and patient knowledge is powerful.

Medical doctors may be able to recite our conditions off a textbook (or maybe not!). But the chronically ill are the ones who need to walk in their tight, crampy, uncomfortable shoes.

Social connections is one of the most crucial elements for our health and well-being. Yet it can be difficult to connect with others when we’re plagued with chronic fatigue and pain.

Aepios opens up channels of relevant communication online, for those who need it most. As they say, “You are loved. The Aepios team is behind you.”

Let’s now learn more about Aepios, how it came to fruition, what it’s all about and how you can benefit from it as a person with chronic illness!

Headshot of Christina DeSerio, CEO of Aepios

In addition to her role as the CEO of Aepios, Christina holds an advanced degree in neuroscience with extensive training in vision science, cognitive neuroscience, and cognitive and developmental psychology. Having worked with some of the most elite labs in the country, her aim is to apply this acquired knowledge to make a positive impact on the world through research, service, and activism.

Numerous studies have shown that the brain is highly adaptable and changeable, and that simply knowing this fact can improve the recovery process. She hopes that by sharing some of the research she has come across in the fields of neuroscience and psychology, she can spur compassion, healing, and recovery.

Hi Christina! Let’s start at the beginning. What is your background?

I am a neuroscientist by education, with extensive training in cognitive neuroscience, developmental psychology, and vision science. Having trained in some of the best labs in the world, I have experience with a wide range of disorders, treatments, and research methodologies.

While knee-deep in my junior year of undergrad at the University of California, Berkeley, I was diagnosed with fibromyalgia, anxiety, chronic migraines, and degenerative disk disease (DDD). I had to take a semester off later that year to have emergency surgery on my spine.

Needless to say, I was still in the midst of digesting my new diagnoses when I graduated Cum Laude with a bachelor’s degree in Psychology in 2014.

How did you come up with the idea for Aepios?

The idea for Aepios was originated by two very close friends of mine about 10 years ago. They were a couple of brothers in medical school at the time, who, while doing their rounds, realized that medicine is not always the best treatment prevailing.

For example, clinicians may suggest the treatments that they are most familiar with, or treatments that they have a greater quantity of, rather than the best treatment on the market.

They also saw that there were differences in which treatments were offered according to where someone lives. For example, academic centers, or teaching hospitals, appeared more likely to suggest treatments based on the latest medical breakthroughs relative to medical centers in rural counties.

Hence there was a need for patients to be better informed early on following a diagnosis. And who better to provide that information than peers from all over the country who have been going through the same thing?

The young doctors decided to create a centralized platform where members could learn about the best treatments out there, and where they could build a strong network of peer support that is free to members.

How did your personal story help out with the idea for Aepios?

I met the founders of Aepios in 2019, just before I completed my graduate degree in neuroscience. Given my personal history with fibromyalgia, anxiety, migraines, and DDD, the mission of Aepios – to provide An Empowering Place to Interact and Openly Share – captured my heart and my attention.

But while the concept was great, the website was not achieving its intended goal… yet. I quickly made it my mission to spearhead the redevelopment of the website from the ground up. Almost immediately, I threw all of my years of training and experience leading research programs and developing and managing projects into reshaping Aepios into the company it is today.

Together, we redesigned the Aepios website with a more targeted goal of providing an uplifting environment for people to connect with others safely. People have really responded to it! I’m very excited for the future of Aepios and I cannot wait to find more ways to help people in their battle against chronic health problems along the way.

When you were diagnosed, how did you find support? Or did you feel like there was a lack of it?

I felt very alone when I was first diagnosed. I didn’t know anyone else going through what I was experiencing. And while the disabilities services at UC Berkeley are among the best in the country, I still had professors who would refuse to provide appropriate disability accommodations, because to them, “I didn’t look sick”.

I didn’t know how to explain my invisible disabilities to them in a way they’d understand. My experiences with professors at graduate school in small town Indiana were even worse. I felt scared, isolated, unseen, and confused.

I didn’t know who to trust or which treatments were right for me. Often when I moved towns, I’d be ripped off my medications without regard to side effects and put on a new treatment plan due to disagreement between doctors in regard to my treatment plan. It took years of research on my own to understand my condition better, and I am still learning.

My struggle to find emotional support lasted for years. As I struggled to carry the heavy load of graduate school while in constant pain, I remember asking my disabilities advocate on campus if they offered any support groups for people with chronic pain disorders. Rather than help me find the support I need, their response was to tell me that I might want to find a less challenging career path to follow.

If Aepios existed then, I could have spoken directly to people who experience the same challenges as me. With just a few clicks, I would have had a friend right there to tell me not to give up. They would have understood without any explanation that my disorder is real, it’s hard, and I can get through it.

I bet they would have told me that all of the pain I was experiencing would lead me to make a positive impact on my community if I could just push through. I know how much I needed to hear that then, and I’m grateful that we can provide that to others now!

What is Aepios? How does it work?

Aepios is a free and secure online platform where members can connect to peers who have been living with the same medical condition. At Aepios, our members can share their experiences with people who are newly diagnosed, gain support from new friends, read articles written just for our members by the doctors at Aepios, and learn about new and existing treatments.

This gives patients the opportunity to obtain better treatments faster and to form a network of connectivity which empowers them to make better decisions about their medical care. Every patient’s journey is unique, but they don’t have to do it alone.

Aepios currently serves over one hundred medical conditions, ranging from anxiety and depression, to various forms of cancer, multiple sclerosis, fibromyalgia, lupus, schizophrenia, dementia, and many more. If we don’t have your condition yet you can easily submit it to us during the registration process and we will create a space for you. Nobody goes it alone at Aepios.

Why is having communities like this so important?

Research has shown an association between loneliness, depression and worse disease outcomes. By providing accessible peer support, the community at Aepios has the potential to improve quality of life and improve prognosis by encouraging compassion and friendship.

Aepios also strives to empower members with more information about their condition and effective treatments so they can take charge in their medical care.

Finally, Aepios gives people like me a voice – a place to help guide those who are newly diagnosed, and to give them a better experience managing their condition from the start. Oftentimes, we realize the contentment of the heart or soul comes when we are helping others and making a real difference.

*Disclaimer: This interview is just a rough guide, and nothing in this article should be taken as medical advice. Always be sure to check with your doctor before you start on any new treatment or protocol.

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Aepios: An Online Network for Patient Empowerment & Connection

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December 10, 2021 18:49

I love the idea of Aepios and what is stands for. I’m definitely going to check it out. It’s such a great idea. I know from personal experience this year after discovering the chronic illness groups just what a positive difference having a community of people who understand what you’re going through and encourage and support you makes. There definitely needs to be a more individual approach with treatment choices in the medical world, I was dismissed and left to do my own research. Trial and error often means doing things which might make you feel worse which is frustrating. Communities like Aepios providing people with potential different treatment options is so beneficial and something that saves so much time, energy and stress for us. Thank you for sharing this interview and informing people about Aepios 🙂

Carrie Kellenberger
December 10, 2021 13:25

This is so interesting! I love that the power of these community spaces for us is becoming more easy to use and more accessible. Although there are times I HATE being online, I’m grateful for concepts like this that bring communities together. Working with other patients and learning for them is one of the best tools I have at my disposal. (Plus it’s nice to meet and get to know new friends who get it!.)

Nikki Albert
Nikki Albert
December 10, 2021 06:43

Thank you for such an interesting interview. I can relate to being a grad student with fibro and chronic migraine. I didn’t even know there were any disability programs available to me or if what I had was a ‘disability’ back then. But I do know my pain was completely unmanaged and after my M.A. I took a break to sort it out… and never returned because it just tanked.

I am getting a better mental and emotional handle on things now- usually via very effective sites like this actually. I find things that work for me and utilize them to my benefit. Doctors can’t do much for pain… let alone suffering. So if I have to live with this pain I have to do something about the mental and emotional consequences myself. And I have.

I will definitely check out this site as I am always looking to advance my knowledge, tweak my coping, learn new strategies and increase my well-being in any way that I can.