*Thank you all so much for the donations and support. I am grateful beyond words for all of the love and support I have received!!*

Hi, my name is Emma and I have Ehlers-Danlos Syndrome. EDS is a rare connective tissue disease that affects every system in the body. I have been sick my entire life. Constant pain, GI issues, random injuries, an allergy to water and cold air, tachycardia, etc. Growing up, I was told my symptoms were in my head and I was just anxious and making myself sick. Come 2022, I’d lost 30+ pounds due to excruciating pain, nausea, vomiting, and other symptoms. This is when I got my first nasal feeding tube and was diagnosed with gastroparesis (paralysis of the stomach), SMAS, small bowel dysmotility, and colonic inertia (my colon was completely unable to function).

After a lifetime of testing, appointments, admissions, procedures, surgeries, etc., I was finally diagnosed with Ehlers-Danlos Syndrome and comorbidities/other conditions. These include POTS, IST, MCAS, adenomyosis, intestinal dysmotility, gastroparesis, intestinal malabsorption, Von Willebrand Disease, chronic thrombocytopenia and anemia, disc degeneration, PCOS, ADHD, anxiety, depression, C-PTSD, and more. For me, EDS causes severe fatigue, joint, muscle, nerve, and whole body pain, joint subluxations and dislocations, organ damage, tachycardia, exploding veins, joint instability, severe GI issues, dizziness, vertigo, blood pooling, allergic reactions, presyncope, muscle weakness, numbness and tingling, and a whole plethora of other symptoms.

EDS and its comorbidities have placed me dying in the ICU. EDS and its comorbidities have robbed me of my ability to properly function, work, go to grad school, go out with friends, etc. I am now on SSI, as I got denied for disability, for the foreseeable future as I continue to deteriorate. I am consumed by these illnesses and symptoms during every moment of every day. EDS took away everything I had but it also provided me with more empathy, compassion, and a better understanding of myself.

I have been through nasal tubes, feeding tubes, an ileostomy, having my rectum and colon removed, central lines, countless procedures, surgeries, hospital admissions, ER visits, hundreds of tests, infusions, injections, treatments, medications, etc.

Unfortunately, there are no cures or treatments for EDS and some of my other illnesses, so we can only try to manage my symptoms for the rest of my life. Due to EDS and my other chronic illnesses, I am on tube feeds and receive IV fluids through a central line. I am on many medications to try to manage my conditions. I pay significant amounts in medical bills every month but cannot get approved for disability even with my conditions. Since 2022, I have begun to struggle to walk and stand due to my constant symptoms and the effects of my illnesses. Tachycardia, blood pooling, vertigo, dizziness, severe pain, and fatigue cause me to struggle to stand or even sit in the same position for more than 5 minutes. This has made me unable to function. Because of these issues, I am trying to get a custom wheelchair.

This GoFundMe was created in order to help raise money for me in order to get a custom wheelchair, as it is not covered by my insurance and Medicaid, as well as medical bills, and medical supplies. Also, I would eventually love to get a service dog in order to increase my independence and ability to function. My next surgery is scheduled for July 16th to have my feeding tube placed back in my intestine, my stomach made smaller, and a hysterectomy for adenomyosis. Thank you for taking the time to read my story and if you are able to/decide to donate, I am so unbelievably grateful for all of the support that I have received after years of medical gaslighting and trauma. Thank you:)

Venmo: emmawenger