Andrea Johnson remembers the vibrant, vivacious person she used to be. She loved to dance. She loved to attend church. And she holds the distinction of being the first female K9 officer at the Department of Corrections. All of that was before a disorder, that not very many people have heard about, has dulled her shine.

Johnson, 50, was diagnosed with mixed connective tissue disease (MCTD) in 2021. It's a disease which has signs and symptoms of a combination of disorders - primarily lupus, scleroderma, and polymyositis. Many people with this uncommon disease also have Sjorgen's syndrome. For this reason, MCTD is sometimes called an overlap disease.

"I liked to dance, and danced a lot," said Johnson. "I can't even do it anymore. My husband [Dennis Johnson] and I was at the jazz club, and I couldn't go on the floor for five minutes. I was tired."

Johnson even struggles to go to church, and is currently seconded to the Ministry of National Security attached to the Shock Treatment program.

She is literally living her life in two acts - before MCTD and with MCTD.

And her life has been impacted tremendously.

Johnson has mobility issues and sometimes can't even walk.

"I get up some mornings, and I'm just hurting ... aches - headaches, body pain, hands and feet swollen. Some mornings, I could not get up to work and had to call in a lot. So, it's affected me a lot because I couldn't perform."

She also said she has rheumatoid arthritis.

In MCTD, the symptoms of the separate diseases usually don't appear all at once. They tend to occur over a number of years, which can complicate diagnosis, according to mayoclinic.org.

The road to Johnson's diagnosis was a long and painful journey with constant doctor's appointments and emergency room visits.

"I had something – and nobody knew what it was. I was extremely tired all the time, suffering with headaches. I would be feverish, more like an inward fever, and my hands would swell. My feet were swollen many times, and I started to have complications with my lungs."

Johnson first started having symptoms around 2015.

She said the doctors could not determine what was wrong and treated her for asthma, and even advised her to take vitamins at one point.

"I kept going back and forth. The doctors thought I was losing my head. I thought I was dying and no one knew what I had."

When she was finally told they had identified her issue, she recalls feeling afraid. She said she thought she had cancer.

"It attacked my lungs and I was severely sick during COVID, so everyone thought it was COVID. When they tested me, I did not have COVID, but my lungs were filled with fluid and they admitted me to hospital and ran tests."

She was told she had MCTD, an autoimmune disorder for which the cause is unknown.

According to mayoclinic.org, early signs and symptoms often involve the hands. Fingers may get puffy, and the fingertips become white and numb, often in response to cold exposure. In later stages, some organs - such as the lungs, heart and kidneys - can be affected.

Muscle and joint pain and rash are also among symptoms.

There is no cure for MCTD. Medication can help manage the signs and symptoms.

Treatment depends on how severe the disease is and the organs involved.

As she suffered over the years, Johnson said she has heard many times over that she does not look sick.

"It's more inward than outward – that's why it's referred to as an invisible disease. People looking at you would say you don't look sick, but physically, it's real hard. It affected my work ethic and attendance a lot. At home, I could not do the things I used to like clean and cook every day. I had to get help and thank God for my husband and children."

In autoimmune disorders, a person's immune system, responsible for fighting off disease, mistakenly attacks healthy cells.

In connective tissue disease, the immune system attacks the fibers that provide the framework and support for the body. Some people with MCTD have a family history of the condition.

Johnson has a cousin with MCTD.

Mayoclinic.org says the role of genetics in the disease remains unclear.

Complications

MCTD can lead to serious complications, some of which can be fatal.

Complications include high blood pressure in the lungs (pulmonary hypertension), interstitial lung disease, heart disease, kidney damage, digestive tract damage, anemia, tissue death, hearing loss, and nerve damage.

Johnson is sharing her story during Lupus Awareness Month, ahead of World Lupus Day on Wednesday, May 10, to increase public understanding of this cruel and mysterious disease.

She is also a member of Lupus 242, which has become a family of sorts for her. She was encouraged to join by her cousin who also has MCTD.

"[My cousin] told me to reach out to Shonalee [Johnson] Lupus 242 vice president and public relations coordinator and my doctor encouraged me to be a part of the organization."

She does not regret joining.

"I finally find a group of people who understand what I'm going through and they are there for me to talk to at any time. Sometimes when I have a flare, someone would be able tell me how to deal with it, and offer comfort and support. I had a problem with my siblings understanding; they would say I don't look sick."

Her worst flare she said would have been when she couldn't breathe, as her lungs were impacted with fluid. And just last week, she had a flare and her feet started to swell.

Johnson is a member of Lupus 242 which was launched by the late Shanelle Brennen with an immediate goal to raise the profile of lupus as a condition and establish itself as a support group for people living with the disease in The Bahamas, allowing them to connect with other people battling similar issues and facing similar health challenges.

Brennen, who had lupus, launched the organization with Johnson who does not have lupus, but who supported her sister.

The sister's late mother Gwendolyn King also had lupus.

So, Johnson has first-hand knowledge of this cruel and mysterious disease, having seen it up close and lived it.

Lupus 242 was originally the idea of Debbie Humes, but she got sick and was unable to pursue the idea of putting the group together.

Brennen launched Lupus 242 in April 2012 with the assistance of Johnson.

Lupus 242's motto is "Breaking the Silence, Supporting the Cure". It was Brennen's intent to have regular meetings and provide education.

Who lupus affects

Lupus can affect people of all nationalities, races, ethnicities, genders and ages.

In lupus, something goes wrong with the immune system, which is the part of the body that fights off viruses, bacteria and germs. Normally, a person's immune system produces proteins called antibodies that protect the body from the invaders. Autoimmune means the immune system cannot tell the difference between the foreign invaders and the body's healthy tissues, and creates antibodies that attack and destroy healthy tissue. The autoantibodies cause inflammation, pain and damage in various parts of the body.

Lupus can be difficult to diagnose because its signs and symptoms often mimic those of other ailments. The most distinctive sign of lupus - a facial rash that resembles the wings of a butterfly unfolding across both cheeks - occurs in many, but not all, cases of lupus.

Other common signs and symptoms include fatigue, fever, joint pain, stiffness and swelling, skin lesions that appear or worsen with sun exposure, fingers and toes that turn white or blue when exposed to cold or during stressful periods, shortness of breath, chest pain, dry eyes, headaches, confusion and memory loss.

Some people are born with a tendency toward developing lupus, which may be triggered by infections, certain drugs, or even sunlight.

While there's no cure for lupus, treatments can help control symptoms.

According to mayoclinic.org, no two cases of lupus are exactly alike. And signs and symptoms may come on suddenly or develop slowly, may be mild or severe, and may be temporary or permanent. Most people with lupus have mild disease characterized by episodes - called flares - when signs and symptoms get worse for a while, then improve or even disappear completely for a time.

Click here to read more at The Nassau Guardian