Hello, I’m Mia. I’m 31 years old and in the last few years, I was diagnosed with mast cell activation syndrome and hypermobile Ehlers-Danlos syndrome after many years of not being taken seriously at times and misdiagnoses. One day at the age of 14, I passed out and after that, everything changed. Little did I know I would spend most of my teenage years and 20s in a hospital. I have depended on IV nutrition (TPN) and jejunal feeds (when tolerated) to survive during the times I either couldn’t keep food down or didn’t absorb enough nutrients.
I would unexpectedly stabilize in my early 20s and have about 4.5 years of more stable health. During this time, I became an EMT and worked. I also worked on finishing my prerequisites for medical school, but unfortunately, around 2019, I developed a severe hiatal hernia which caused some bleeding, leading to needing esophageal surgery at the start of COVID-days. Unfortunately, this first surgery failed, and I required another surgery to correct it, which only made things worse. Eventually, this surgeon left very suddenly, and other patients had not had success with him either. Since this surgery, I have had severe issues with GI bleeds, swelling episodes, and nutrition, and am currently TPN-dependent (I get most of my nutrition through an intravenous line in my chest).
The last year has been especially challenging. In early 2024 my dad was diagnosed with stage 4 lung cancer, and he is still battling hard as this is up. In 2024 began to have severe anaphylactic episodes randomly after one of my surgeries. I have had over 30 anaphylactic episodes in a year, and some needing ICU trips. It has been terrifying to survive so much and then have these episodes now. I was diagnosed with mast cell activation syndrome a couple of weeks ago, and I have a specialist who will be ordering IV meds for me to have at home in case of emergencies, and I will be trying Xolair shots to retrain my immune system.
I have made it very clear to my doctors that my goal now is to live my life and stay outpatient as much as possible, so I am working on a plan with palliative and my PCP to do that. I want to begin advocating more for safer healthcare and for other patients. Our healthcare system has imploded.
The amount of epinephrine and steroids I’ve had to use to get me through this has been absurd, and my insurance only covers 4 EpiPens a month. I have held off on fundraising because I struggle with asking for help, but I am quite literally drowning financially. I have a tire that’s barely functioning, a windshield that got cracked by a rock, a battery that needs replacing, and I recently had to replace my brakes. This is how I get to my appointments.
I do get SSD, but after insurance is taken from that, I only get around $1100/month. Due to the appointments and hospital stays, I haven’t physically been able to return to work successfully, although I’ve tried many times.
I hope to travel to Phoenix or potentially move down to be close to better medical care for mast cell/EDS when or if that will be possible financially.
Right now, I check my bank account multiple times a day and often cry not knowing which meds to pick and choose.
My end goal is to become a doctor and fight for patients from the inside. I am persevering and will not give that up even if I die trying to get there.
Thank you for considering helping me out during this scary season of my lifetime. It has been hard for me to come out so transparently about how bad things are, but I’m growing and realizing it’s okay to ask for help sometimes. Best wishes & lots of love!
Mia
