My name is Brittany, and I have been living with with Postural Orthostatic Tachycardia Syndrome (POTS) and Ehlers-Danlos Syndrome (EDS) since August of 2022. Two chronic, debilitating conditions. I recently went to my lung specialist, and the test results suggest bullous disease (air pockets in the lungs from tissue damage) or early airway closure (when the small airways collapse too soon, trapping air inside the lungs). Both of these conditions make it harder for me to breathe, increase the risk of lung complications, and add another layer of difficulty on top of my daily health struggles.

On top of that, I also live with a mast cell disorder (which causes severe allergic-type reactions and inflammation throughout my body), a white blood cell disease that affects my immune system, and pineal cysts in my brain that require ongoing MRI scans every 6–12 months to monitor for changes.

Before my health declined, I ran my own photography business, worked at a store in downtown Woodstock, and also photographed for another company. I loved my work and poured my heart into it.

I haven’t been able to work since November 2024. I have no idea how I managed to work that long. Losing my health meant losing my jobs and my business. I applied for disability once and was denied. My specialist at the time wanted to “exhaust all treatment options” first, despite me being unemployed for nearly a year. I’m trying again, but the process is long, uncertain, and exhausting.

I have been to the ER more times than I can count. I was admitted once for "failure to thrive" at just 80 pounds to only lose weight in their care.

I eventually got stronger at home. I’ve worked hard to regain some weight to 88 pounds. I am now recovering from port surgery to help make IV therapy more accessible. Unfortunately I've lost the weight I've gained and I'm down to 83 pounds.

My treatment includes IV therapy twice a week at a hospital. This is essential for managing symptoms, but since I can’t drive, it’s been nearly impossible to make it there consistently. Right now, I only make it once a week if possible.

If I can’t go to the hospital, I have to use a private hydration clinic, which is not covered by insurance. These costs add up. I’m hoping my new port will eventually allow me to get home care so I can finally receive the treatments as prescribed.

This Fundraiser Will Help Me:

-Cover urgent medical costs that insurance does not pay for

-Afford hydration therapy when I can’t get to the hospital

-Pay for transportation or set up in-home IV care so I can receive treatment as prescribed

-Stay afloat financially while I reapply for disability

How You Can Help:

*Donate — any amount, big or small, truly helps.

*Share my story to spread awareness of POTS and EDS so more people understand what this illness looks like.

*Offer resources, connections or even words of encouragement mean the world to us.

These illnesses impact nearly every aspect of my life. With POTS, when I stand up, my heart rate can skyrocket while my blood pressure drops dangerously low, leaving me dizzy, weak, or fainting. I struggle with vision disturbances, body pain, brain fog, and extreme fatigue that makes even simple tasks exhausting. Because my blood doesn’t circulate properly, I often feel like my body is shutting down just from doing normal daily activities.

EDS adds another layer of difficulty causing joint instability, chronic pain, and injuries that take longer to heal. My connective tissue doesn’t support my body the way it should, which means I live with constant discomfort, fragile joints, and unpredictable flare-ups that limit my mobility.

Together, these conditions make eating enough to maintain my weight a challenge, standing or walking for long periods unsafe, and even showering or household chores overwhelming. The illnesses are unpredictable, I can feel okay one minute and suddenly collapse the next. They’ve taken away my independence, my ability to work, and much of the life I once had. I'm slowly losing everything.

I’m sharing my story in the hope of getting the support I need while also raising awareness for conditions that are often misunderstood, misdiagnosed, and dismissed.