The uncertainty of a silent disease can be overwhelming. That’s why Ramona Smith manages her lupus one day at a time. 

Growing up in New Orleans, Ramona Smith never skipped a doctor's appointment and was considered a healthy child. She was surprised and would have never imagined being diagnosed with any illness — certainly not with lupus. 

Lupus is an autoimmune disease that happens when the body’s immune system attacks its own tissues and organs causing inflammation and affecting joints, skin, kidneys, blood cells, brain, heart and lungs. In most cases the cause of lupus is unknown, and it comes with no previous warnings. 

Back in 2004, when Smith was only 20 years old, she paid a visit to the doctor with swelling in her feet and was initially diagnosed with gout, a type of inflammatory arthritis that causes pain and swelling in the joints. It was not until the swelling and pain started extending to other joints and parts of her body that doctors started testing her for other things. 

Finally, after a series of studies that took about six months, she was diagnosed with Systemic Lupus Erythematosus — also known as SLE, the most common type of lupus. The only reference she had to this disease was her cousin who died from lupus complications at the age of 35: “I was scared because I know lupus can lead to death,” Smith said. 

Surprised and scared by the new development, her main concern was the affordability of medications and treatments. But from the beginning, she was determined to overcome the disease and any adversity it caused. 

Silent and cruel 

Because it’s often difficult to diagnose, lupus is referred to as the invisible disease, a cruel mystery, a silent disease, and for some not only silent but also a slow killer. 

“Sometimes people ignore health warnings. The thing with lupus is that it mimics other diseases, and it’s hard to diagnose,” Smith said. 

Lupus signs and symptoms mimic other diseases and often come and go as flare-ups — when symptoms worsen — and remissions – when symptoms are less severe and more manageable. Because of its nature, years may pass before detection. It requires a differential diagnosis consisting of a series of tests — including blood, urinalysis, antinuclear antibody tests, and biopsy — that show the same symptoms and lead to a final diagnosis. After this long process, a treatment can be prescribed. 

Treatment usually consists of taking one or two tablets daily to improve symptoms and prevent flare-ups and other health problems often caused by lupus. But even for a person who follows this strictly, it does not mean they are safe from remissions or pain. The treatment only makes it bearable and, in most cases, must be combined with other medications to manage pain and other conditions that arise. 

Treatment for lupus can have adverse side effects, including reducing the chance of having children. Smith’s doctor in New Orleans made sure she received a course of treatment that would not affect her in that way and give her the chance to have children one day.  

Inside1 housing

Smith and her daughter at Walk to End Lupus Now.

Photo courtesy of Ramona Smith

After Hurricane Katrina in 2005, Smith moved to Houston and landed a city job with the Houston Police Department, where she stayed for four years before moving to the Houston Airport System, where she has made most of her career. During her transition, she lost contact with her doctor in New Orleans. Later at age 26 Smith had a daughter — her biggest joy and motivation to keep going. To this day she has not had the chance to meet again with the unsung hero who made this possible for her: “I just want to thank her,” Smith said. 

Invisible and unpredictable 

For Smith one of the hardest parts of having lupus is how to explain her invisible disease. “I look perfectly healthy on the outside, but the pain is inside,” she said, adding that unless she’s going through a remission where she is swelling or experiencing hair loss, her type of lupus will not be noticeable. Other less common types of lupus are drug-induced, neonatal, and cutaneous — the last one affects the skin. 

While lupus is a widespread disease, a study from the Lupus Foundation of America, showed that 63% of Americans surveyed did not know or had never heard of lupus. 

One of her worst experiences living with lupus was being hospitalized due to excessive fluid retention in her legs and feet and having to use syringes to take the fluid out. 

According to the Lupus Foundation of America, 65% of people living with lupus listed chronic pain as the most difficult aspect. It is especially challenging when flare-ups come and go with no warning. 

“I can be perfectly fine today and not feel good tomorrow,” Smith said. 

In her experience, lupus is as unpredictable as not being able to get out of bed on any given day and as simple as not being able to open a capped bottle. 

Of the 1.5 million Americans diagnosed with this disease, nine out of 10 are women between 15 and 44. Also, followed by Hispanics, African American women are the most affected sector of the population and most likely to have a major organ or tissue in the body affected – such as heart, lung, kidney, or brain – and more active disease as a lupus collateral. 

With improvements in disease management and earlier diagnosis, deaths related to complications from lupus are estimated between 10% and 15% of cases. 

Survival mode 

Smith tended to get sick more often than co-workers and friends. She began hoping for the best but fearing the worst. Then saw a major decline in her health when lupus attacked her kidney. In December 2015, she started dialysis as an overnight procedure that flushed the fluids and toxins out of her kidney through a catheter in her stomach. She went through the 10- to 12-hour daily process for more than two years. 

Inside1 housing

Walk to End Lupus Now 2019.

Photo courtesy of Ramona Smith

During the hardest moment in her life, she felt her body was about to give up. The decline in her health was evident, her skin was drying out, she had no sense of taste, and her then 80-pound body was rejecting food, making it hard to stay healthy and in compliance with the organ transplant requirements. 

When everything seemed lost, she found her motivation in her daughter, then in the third grade. Smith wanted to be in her life, see her grow and graduate one day. “You have the choice to fight for your life,” she told herself. 

With constant and severe muscle cramping due to dialysis, Smith maintained the strict diet she had to follow to stay on the list of transplant candidates. Everything was still uncertain for her. Living in survival mode, she felt she was barely making it through each day. 

Kidney failure is one of the leading causes of lupus-related deaths. After joining the waiting list, the estimated wait for a kidney transplant is three to five years. During this time, health conditions may decrease. Even after receiving a kidney transplant, the body may reject it within the first six months, but rejection can occur at any time. 

In March 2018, at the age of 35, Smith received a kidney transplant and felt the change right away. After six months her health improved noticeably. “Ramona is coming back,” she said. But to stay healthy, apart from her lupus treatment, daily dosage of steroids, and arthritis medication, she now added to the list immunosuppressive drugs to keep her immune system from attacking the transplanted organ. 

Smith knew this was not the end of the battle, but at least she could take a breath and step out of survival mode. It was not easy. After the physically and mentally devastating situation she went through, there was a lot to process and let go. For that, she sought professional help through therapy. Smith recalls how hard it was to sleep with the recurrent thought of dying. 

It's not uncommon for people with chronic decades to experience depression, anxiety, or other mental health disorders. For people living with lupus, depression and anxiety may occur due to medications used to treat the diseases — apart from the economic, social, work, relationship, day-to-day life challenges, and other instances that living with lupus may affect. 

Live life as it comes 

“You can’t live in doubt every day,” is what Smith says when it comes to uncertainty. Even though the stakes are high with the risk of her body rejecting the transplant and the unpredictability of lupus, she takes life as it comes. “While it’s good, I just have to enjoy it and face that when it happens … if it happens!” she said. 

Six years after the transplant, Smith remembers that going through her toughest time, she felt love and saw the best in humanity. She is especially thankful to her donor and their family. But she is also grateful for friends, family and co-workers who not only donated work hours and gift cards but also volunteered to take her daughter to hair appointments. She is also grateful for the attention, guidance, and support she received from Cigna and Continental American Insurance – COH supplemental insurance plan. When she was first diagnosed, her biggest fear was the affordability of medications and treatments. Having the healthcare system support was a relief, she said. 

Smith is an airport operations specialist with the Houston Airport System and has worked for the City of Houston for 18 years. She has also become an activist for lupus, making sure it gets visibility and awareness by promoting the “Walk to End Lupus Now” event in Houston, wearing purple during May and the commemorative lights at William P. Hobby Airport, Montrose bridges, and City Hall to honor the cause.

 

3and4 web