I’m 44, Have a Ph.D., and I’m Dying Without Formula

Story

Hi, my name is Kristen Alexander. I’m 44 years old, and I have a PhD in physics. I’m the person you might remember as quiet, maybe a little awkward—someone who didn’t talk much, someone who seemed like they were doing okay. But the truth is, I’ve been fighting a battle I never wanted—and I’m running out of options.

I have Ehlers-Danlos Syndrome (EDS), a rare genetic disorder that makes my body fragile in ways you can’t see. Because of EDS, I developed Grade 4 intractable gastroparesis—a severe form of stomach paralysis. My stomach can’t process food, or even water. I survive on medical formula delivered through a feeding tube. It’s the only thing keeping me alive.

Without this formula, I will dehydrate and die within days. That’s not a figure of speech—it’s my reality.

Over the past year, I’ve been through:
– Countless NJ tube placements—feeding tubes placed through my nose and down my throat *while I was awake*. Each one is a painful, invasive procedure that leaves you raw, exhausted, and terrified.
– 20 GJ tube replacements—procedures that involve cutting a hole through my abdomen and into my stomach, then threading a tube through that hole and into my intestines. These aren’t simple outpatient fixes. They are painful, invasive surgeries that leave the area so raw and sensitized that it hurts to breathe, hurts to move, hurts to *exist*. Every time a tube flips—and they flip often, within 24 to 48 hours because of my condition—I go back to the hospital, endure another placement, and return home to vomit and starve in between.
– A pyloroplasty surgery—an operation meant to reconnect my stomach and intestines in hopes of improving digestion. It didn’t help. Instead, it left my stomach bleeding and my condition worse than before.
– A MRSA infection from my most recent surgical J-tube placement. My labs are worsening, and I’m fighting hard to recover.

I’ve spent my life being the one who tried to hold it together, who didn’t ask for much. My partner, Mitya, has been the person who’s shown me what care really looks like. He’s done everything he can to support me. But this fight is bigger than the two of us.

The formula I need to survive costs between 1,200 and 1,500 every month. My insurance has denied coverage. My partner and I have been trying to hold on, but we can’t do this alone.

If you’re able to contribute toward the cost of the formula that’s keeping me alive, I am deeply grateful. If you can’t, sharing this with others who might be able to help is just as important.

Thank you for taking the time to read my story. Thank you for caring. Your support could quite literally save my life.

—Kristen

Organizers :

Kristen Alexander is organizing this fundraiser.