While there is life, there is hope! 

Posted August 20, 2019

My story is like most with EDS. As a young child, I heard “it’s just growing pains” multiple times. As a teenager, my immune system dipped and infection wreaked havoc on my body. It wasn’t until a virus came a few years later that left permanent damage.

I was diagnosed with hypermobile EDS (hEDS) in January 2016, at age 20. This diagnosis came after a full year of sickness, countless doctors’ visits, my body rejecting everything, and many misdiagnoses and “you look fine” answers from doctors who didn’t know any better. I lost 30 pounds in 5 weeks.

In the 2 years following, I accumulated a multitude of diagnoses all under the umbrella of EDS including: gastroparesis, orthostatic hypotension, postural orthostatic tachycardia, irritable bowel syndrome, mast cell activation syndrome, and more.

I had a gastric neurostimulator placed in my abdomen mid-June 2018 that is connected to my stomach, to send signals to my brain to decrease nausea, in efforts to better my quality of life. Because my stomach does not break down food, pills, or even liquids well, I have had to find alternatives to common medicines, most coming in an intravenous (IV) form. In August 2018, I had a central catheter (PICC line) placed to have IV fluids and medicine administered. In my most recent hospital stay, my primary care physician and I found medications that are going to be beneficial next steps for me. This doctor specializes in EDS – one of the few in the world! He is a blessing to have on my care team and definitely needed in my current state.

Attending school has been a struggle since high school. The physical exertion is tough on my body. After switching majors in college multiple times, I settled with taking online classes. Unfortunately, my nutrition began failing and I could not attend classes with the abilities to pass with proper grades. Unfortunately, at the end of September, I was let go from my part time job due to my many medical absences. I am in the process of getting on disability because there are not many jobs I can physically do at this point. I am trying all forms of therapy before (and hopefully never) having to use total parental nutrition (TPN – nutrition through IV) or surgical feeding tube.

Next steps for me include using my permanent disability parking placard, rolling walker, and wheelchair to be as active as I can. I will continue to see the various medical professionals (physical therapist, psychotherapist, nutritionist, acupuncturist, and specialty doctors) for continued care. I plan on finding a service dog to help with mobility/stabilization, picking up dropped items, alert for seizures and POTS attacks, and perform deep pressure therapy.

As you can see, this disorder has flipped my life upside down, even with proper accommodations. But at the end of the day, I am still here, still fighting. And if I can do it, I’m sure you can too!

Over the last few years, my medical bills have piled up and have not had a break. It is very expensive living with these diagnoses as I have had many specialized testings done, multiple hospitalizations, and most treatments are alternative and not fully covered by insurance. These treatments including medical marijuana, acupuncture, physical therapy, and IV therapy are lifesaving and greatly improve my quality of life.

Thank you for reading my story. EDS awareness is my biggest goal. Awareness is the only way for better diagnosing and treatment options will be available, so others don’t have to go through the excruciatingly long process to find answers like I did.

I know my current state will not last forever, I will get better; we just have to figure out how to maintain a good quality of life with my fragile body. With the help of new IV medicines, an appetite stimulant, and pedaling each day for 20-40 minutes, I can say I am feeling better than before going into the hospital and starting to grow muscle again! I know healing is not always linear and I will have falls, but I will prevail!

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