Sommer Edwards’ Battle with an Invisible Illness

Source: Sommers Edwards

Source: Sommers Edwards

Debra Born, Staff Writer

She is racing down the field, skillfully maneuvering the soccer ball around her competitors at a dizzying speed as she zeroes in on the goal.

She is dancing, twirling and spinning in a complicated pattern, performing with an accomplished rhythm that is the result of both hard work and sheer talent.

Fast forward to two years later in her young, vibrant life.

She is lying flat in bed, so exhausted that she cannot get up or even move her legs.

Sommer Edwards is a high-achieving junior majoring in Psychology at UC, and some mornings she literally can’t get up. She was diagnosed in November 2016 with Dysautonomia, a condition that changed her life forever.

Dysautonomia is an umbrella term for Edwards’ condition – POTS (Postural Orthostatic Tachycardia Syndrome) – which attacks the “automatic” functions of the body, such as blood pressure and temperature control. Symptoms include dizziness, fainting, nausea, extreme fatigue and an inability to stand.

One of Edwards’ symptoms is an elevated heart rate. Sitting or standing causes her heartbeat to pump as fast as is normal when running a race.  

Unfortunately, POTS  has no cure and the symptoms cannot be lessened.

“Some days you feel OK when you get up but other days you can’t get up,” Edwards said. “It’s very common for people to have depression. It [POTS] minimizes your way of life.”

Edwards was forced to give up soccer, dancing, hiking, swimming and other athletic hobbies. However, other activities keep her busy, including art, photography and going to the mall.

“I still manage to have fun and I have really good friends who keep my limitations in mind with what we do,” Edwards said. “I really like learning. School keeps me distracted.”

Edwards also has a strong family support system.

“My parents are extremely supportive and they are always keeping my limitations in mind and asking how I feel,” Edwards said. “They’ve been really great.”

Dysautonomia is nicknamed the “invisible illness” because it may not affect a person’s outward appearance.

Edwards said that most people do not believe she has a serious medical condition.

“A lot of times it feels like you have it only in your head,” Edwards said. “It’s hard because you have no outside proof of what’s happening on the inside.”

This year, Edwards added Healthcare Advocacy as a minor.

“It kind of encouraged me to spread awareness about what it is that I have because it isn’t very well known,” Edwards said. “I just think that a lot more people should know about it.”

October is Dysautonomia Awareness Month. However, the most often displayed color of ribbon people see is pink for breast cancer awareness, because the turquoise ribbons representing Dysautonomia are as scarce as the people willing to talk about their condition.

“Something that really presses with me is that I would like professors to understand,” Edwards said. “It is really hard on the inside, even just getting to my classes on time. I just have to go lie down sometimes. I can’t sit more than an hour.”

Edwards had to learn how to adjust to college life while experiencing extreme fatigue, a skyrocketing heart rate, and other serious symptoms.

“It was difficult when I first got it going from being a very active person and then not being able to get out of bed and do the simple things like walk up a flight of stairs,” Edwards said. “Now I know how to manage it and how to pace myself. I am starting to look at it as an opportunity to advocate.”

Edwards’ condition was the direct result of a doctor’s mistakes.

During her freshman year at UC, Edwards was diagnosed with ADD and her doctor automatically put her on the highest dose of a new medication, without factoring in Edwards’ age, weight, and sex, and without gradually introducing her to the medication. A few weeks later during Thanksgiving break, Edwards became very ill and her parents took her to the doctor because she couldn’t move.  Instead of weaning her off the medication, her doctor immediately discontinued it. That second medical mistake resulted in POTS – a diagnosis that Edwards will have to live with for the rest of her life.

Even in the face of this life-changing condition, Edwards personifies motivation. Edwards went back to school the day after her diagnosis and continued with a full-time course load.

“I’ve been very adamant about getting my degree and not hampering the goals that I’ve set for myself,” Edwards said.

Connect with Edwards [email protected] to talk about Dysautonomia or POTS from the perspective of a person who deals with it as a successful student at Utica College.