Georgia’s Journey with Dysautonomia of Adolescence

Hey, my name is Georgia Vlahos. I’m 16 years old and I love to work with children with learning disabilities and/or special needs. I was also a full-time dancer. I live my life with Dysautonomia of Adolescence.  Here’s a look into my life!

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Question: If you weren’t born with your condition, what do you miss the most from before? What do you grieve from your prior experience? And what’s one thing you were able to do before that you’re no longer able to do?

Georgia’s Response: I miss being able to stand up without the fear of passing out, as well as the freedom to live a normal life. It’s difficult to come to terms with the loss of these simple, everyday experiences.

Question: What are the main symptoms you experience?

Georgia’s Response: The primary symptoms I experience include nausea, brain fog, and chronic fatigue, which often make it difficult to focus or get through daily tasks. I also struggle with fainting and frequent episodes of pre-syncope, where I feel like I’m about to pass out. Temperature dysregulation is another challenge, as I often feel unusually hot or cold without warning. Blood pooling, particularly in my legs, leads to discomfort and can worsen dizziness and faintness.

Other symptoms include persistent headaches, episodes of lightheadedness, and vision problems like blurred or tunnel vision, which can be disorienting. I also deal with gastrointestinal issues, muscle weakness, and shakiness. On top of that, I experience heart palpitations, which can be unsettling and add to the general sense of fatigue and discomfort. These symptoms fluctuate in severity, but they significantly impact my ability to manage daily activities.

Question: How does your condition affect your daily life and school?

Georgia’s Response: My condition makes it difficult to focus and see clearly, especially with the added challenges of vertigo and anemia. I experience constant brain fog, which causes me to forget things frequently, making it hard to keep up with lessons and assignments. I often have to leave class due to my symptoms, which disrupts my learning and makes staying on track even more challenging.

Question: What are the toughest parts about living with this condition? Be as specific as possible!

Georgia’s Response: One of the hardest aspects is not being able to keep up with people who are fully healthy and capable of doing simple, everyday tasks that, for me, require all my energy. I get exhausted very easily—sometimes, even getting out of bed drains me completely. I often have to cancel plans or say I’m busy when the truth is I’m just too weak to go out. On days when I do feel okay, I get excited and energized, which can make me feel almost “normal”—but then I inevitably crash, which is physically exhausting and mentally discouraging.

Beyond the physical toll, the condition is mentally draining. Some days, I feel completely worthless and overwhelmed, and I can’t help but wonder, why me? It’s a constant battle to accept my limitations while wanting so much to do the things others do with ease.

Question: What tips or strategies have helped you manage your condition?

Georgia’s Response: Staying hydrated with plenty of water and electrolytes has been essential, as well as incorporating more salt into my diet to help with blood pressure regulation. Maintaining a stable, balanced diet and cutting down on junk food (which is definitely a challenge) has also helped, as these foods tend to make me crash. Talking to a therapist and connecting with a support group of others with the same condition has been invaluable; it’s comforting to find people who truly understand this experience. Another key strategy is recognizing that it’s okay to have bad days and that self-care—both physically and mentally—is crucial.

Question: What kind of support (from friends, family, or others) has been most helpful?

Georgia’s Response: The most helpful support has been from those who listen and show understanding, as well as those who allow me to take the time I need on days when I simply can’t function. I’m also incredibly grateful for the BC Children’s Hospital Dysautonomia Clinic, which contacts me every week to check in and provide advice. Having a strong support system around me makes a world of difference, and I deeply appreciate it.

Question: What’s one thing you wish people understood about living with a chronic condition? 

Georgia’s Response: I wish people understood that just because someone looks okay and appears healthy, it doesn’t mean they aren’t facing significant challenges. Chronic conditions often have invisible symptoms that affect a person’s physical, mental, and emotional well-being. It’s easy to assume someone is fine based on their outward appearance, but many of us work hard to mask our struggles to avoid being treated differently or misunderstood. Living with a chronic condition is a constant battle, even when it’s not immediately visible to others.

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