Thriving with a rare disorder

At first glance, nobody can tell all the struggles I’ve endured in an era that is all about image. While genetic disorders affect individuals in rare cases, intellectual disabilities, depression and anxiety occur most frequently in men and women. These conditions are only some of the health issues I regularly face. In retrospect, I shouldn’t be alive given the battles I’ve fought and health challenges that have nearly ended my life. I’m one of those unlucky few who has dozens of medical diagnoses with numerous compounding symptoms. I live with a rare genetic syndrome known as 22Q11.2 deletion syndrome, also known as DiGeorge syndrome.

Get to know 22Q11.2 deletion syndrome

22Q11.2 deletion syndrome is caused by a microdeletion of the 22nd chromosome and is next door to Down syndrome. Within recent years, women and men have been discovering later in their adult life that they have this syndrome.

It wasn’t until I was 24 and earning my Bachelor of Fine Arts degree when a cardiologist diagnosed me with 22Q11.2 deletion syndrome. It came about after I fainted in my drawing studio. However, all my life, I was categorised as different and suffered from dozens of minor to major ailments and delays in my childhood education and throughout my adult life.

It’s worth being in the know of 22Q11.2 deletion syndrome, because with more discussion and awareness more diagnoses will manifest. This could mean lives will be saved if the deletion is found early in patients, providing further options for treatments.

Symptoms

There are more than 200 medical symptoms associated with 22Q11.2 deletion syndrome. Geneticists, cardiologists and immunologists are the specialists known to identify cases in individuals with congenital and structural heart disease. Specifically, I am primary immune deficient and most of my infection-fighting T-Cells my system produces are defective. These defects complicate my body’s ability to ward off infections and diseases.

I struggle with chronic fatigue and repeated heart episodes caused by supraventricular tachycardia. As much as I dislike interrupting my workday for napping, I’ve learned that a nap is a source of energy and essential for productivity. I’ve witnessed the consequences of overworking and ignoring these symptoms. On the opposite side of the spectrum, I’ve reaped the benefits of responding to my body’s needs accordingly.

The turning point

After I graduated college and proudly earned my BFA in 2008, I spent one year coping with the news of my 22Q11.2 deletion syndrome diagnosis. In the spring of 2009, I underwent image scanning, and my cardiologist unveiled an anomalous coronary artery defect. The heart defect can induce sudden death in men and women before the age of 40, and I found myself facing the possibility of yet another open-heart surgery.

For four months, I went through various medical evaluations to determine the position of my artery and if I was a good candidate for the surgery. A date was scheduled to have the heart operation on Tuesday, August 18 at 5am. My anxiety and mental health were in despair and I was terrified beyond words. In that waiting period, I produced more than 30 abstract paintings and took sewing classes as a coping mechanism to overcome crippling anxiety.

I had also designed my first clothing line and was expanding my creative horizons.

A medical evaluation showed that I have a right anomalous coronary artery and not a left. That’s a classic 22nd chromosomal deletion defect. I have an unusual heart anatomy: the organ is turned to the right with a right aortic arch instead of a left. My surgery was then cancelled, and in late autumn of 2009 I began the most creative and rewarding journey of my life.
I was participating in runway shows, showcasing my handmade clothing designs and having gallery exhibitions. But with my successes came more health problems.

In December of 2015, while I was travelling for the Christmas holiday, my lung with the congenital cyst collapsed on an aeroplane and I had lung surgery that Christmas Eve. Following the trauma, I began suffering from full-body pain flare-ups and was diagnosed with fibromyalgia.

Three years later, it was early in 2019, digestive distress symptoms prompted me to seek medical care for ongoing intestinal problems. A CAT scan revealed that I had a splenic artery aneurysm, and it was repaired at Northwestern Medicine in Chicago. The aneurysm was symptomatic and the size of a mandarin orange by the time of the surgery. It was another turning point as I became single after 10 years and relocated back to my home town outside Chicago.

I was tasked with recovering from surgery and heartache while simultaneously re-establishing my sewing and art businesses.
The pandemic in 2020 forced me to isolate until vaccines were available. But despite having received the vaccines, in August of 2021 I fell ill to the Delta variant of COVID. The symptoms of long COVID sent me to the emergency room a lot. Somehow, I was borderline septic shock, but after five days I fully recovered.

Then, this past spring, long COVID spiralled into an autoimmune response, and I was diagnosed with the autoimmune form of vasculitis called Behçet’s syndrome. Behçet’s flare-ups can last up to four to six weeks, affecting every inch of the body, and it’s excruciating to experience.

Designing hope

Today, I treat holistically through diet, homeopathy and natural sources of healing. Meditation, breathing techniques and affirmations moved me through illness, grief and hardships. I must stress the importance of counselling and a support system. I had arrived at a place of accepting my whole self in all my flaws, surgeries and hardships.

Being of service in my sewing and art has inspired me to be of better service to myself and mental health. Creating art and using my voice to share my story was how I found my purpose. The diagnosis of 22Q11.2 deletion syndrome taught me to embrace these challenges through creative expression.

Daily, I receive emails from perfect strangers all over the world that ask me about work and commission me to draw their family portraits. They proceed to share their stories with me, and it profoundly affects me. It’s these connections with people that bring me the most joy and motivate me to keep soaring to new heights. I hope that my story may inspire others to believe in themselves despite their challenges and differences. To learn more about Tessa visit tessakoller.com.

Featured in WellBeing #203