Emma Alvarez-Roth is an artist that studies stage and production management. She became chronically ill in January 2020 and wanted to share her story.

As of right now, I’ve been diagnosed with:

• Gastroparesis

• Dysautonomia

• Hypothyroidism

• Abdominal Cutaneous Nerve Entrapment Syndrome (ACNES)

• Steatosis 1 (Fatty Liver Disease)

• Odynophagia

• Dysphagia

• Gluten Intolerance

• Gastroesophageal Reflux Disease (GERD)

• Hiatal Hernia

• Benign Paroxysmal Positional Vertigo (BPPV)

• Hypoglycemia

• (potentially nutrition related) Dystonic tremors

• Unknown foot injury*

• Unknown primary condition*

*see next FAQ for more info on these.

• It’s common for people with chronic illnesses to have or acquire multiple illnesses. In my case we know some of my conditions but not all of them.

• In regards to my stomach issues, Gastroparesis is not enough to explain my severe debilitating symptoms and usually is caused by something else. We do not know what that something else is yet so therefore I’m considered “undiagnosed”.

• In regards to my toe injury, I’ve been given many guesses from doctors but no one is sure of what is truly wrong so therefore it is also “undiagnosed”.

As of June 24th, 2021, my body began being unable to tolerate food.

This meant that for me, anytime I ate very small amounts of food, it would trigger very drastic symptoms. Because I didn’t know this until much later, I continued eating and my symptoms escalated to a point where it almost killed me. I was then put on a “failure to thrive” which means malnutrition.

• If I do eat small amounts of food or drinks it can cause me to be immobilized in bed in severe pain and nausea for as little as 1 week up to 7 1/2 months (as of my most recent longest flare).

• Therefore, I do not eat or drink much (mostly NPO) and have TPN to provide me nutrition through my central line to avoid my GI system and cause more problems.

In short terms- nothing.

I stopped eating meals in August 2021 and stopped eating any kind of food (candies, gum, etc.) in November 2022.

• I have done multiple experiments with my doctors to try eating but it always results in very large flares that last months.

• I do take pills every morning and drink water to take them. I sometimes take muscle relaxers to drop the pills down (since they get stuck) because of my difficulty swallowing.

TPN, especially long term TPN, can cause liver issues over time.

• Since my TPN has to run for 24 hours, my liver is constantly filtering through the medicine in my bloodstream.

• My liver enzymes started getting really dangerously high. To combat this (occurred 2021-2022), my doctors had me infuse 3 TPN bags that don’t have lipids in them. Lipids are what makes the bags white in color so without them it looks clear. I infused 4 lipid bags and 3 non-lipid bags a week and alternate between them so some days my tubes look clear.

• I injured the area under my left big toe on March 14th of 2020.

• I tried numerous treatments, one of which was a cortisone injection done in July of 2020. This injection caused all of my tissue to atrophy away and damaged my skin.

• Alongside not being able to bear weight on it, I then had to be careful not to have the bone ulcerate through.

• As of today, my foot is still undiagnosed and still injured.

• I was told by my doctors to only every wear my Doc Martens to protect my toe and not injure it further. (Therefore the heels are only for photos- hopefully just for now).