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Lupus

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THE GREAT IMITATOR NOT ALWAYS WHAT IT SEEMS LIVING WITH LUPUS IMPROVEMENTS IN CARE PREGNANCY HEART HEALTH Fall 2022

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Pregnancy and lupus Improving outcomes

Lupus

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The heart of

matter

baystatebanner.com/category/health/be-healthy | Be Healthy 3 PHOTO: ADOBE STOCK The issue Lupus Effects on the body Focus Pregnancy Growing up with lupus Heart disease and lupus Lupus: One man’s story Healthy steps Nutrition Get Physical 4 7 10 12 14 16 20 22 14
the
Heart disease and lupus 10
Fall 2022
COVER PHOTO: ADOBE STOCK

Lupus

Lupus: The great imitator

Not always what it seems

FOR MANY DISEASES, THE DIAGNOSIS IS PRETTY STRAIGHT FORWARD. AN X-RAY SPOTS THAT BROKEN BONE. A CARDIAC CATHETERIZATION FINDS THE OBSTRUCTION THAT PORTENDS A HEART ATTACK.

Not so with systemic lupus ery thematosus, commonly referred to as lupus. The disease has a wide variety of symptoms that can be signs of other medical conditions as well. That’s why it’s called the great imitator. Because of this, many cases go undetected or misdiagnosed, according to the Lupus Foundation of America. It can take up to seven years to correctly identify the disease.

The cause

The confusion is understandable. Lupus is an autoimmune disease. The immune system is designed to protect us. It ferrets out intruders, such as vi ruses and bacteria and marks them for destruction. In an autoimmune disease, however, the system actually turns on itself and mistakenly attacks normal cells. It can’t differentiate between you and that virus.

The problem is that the immune system covers a wide territory. Any part

Lupus is two to three times more prevalent among women of color than among white women. Lupus affects one in 537 African American women.

of the body is a potential target. Such is the case with lupus. It may attack the skin, joints, kidney, heart and lungs. It causes fatigue, chest and joint pain, shortness of breath and even brain fog, to name a few.

“There’s not one particular symptom that stands out when determining a diagnosis,” explained Dr. Karen Costen bader, the director of the Lupus Pro gram at Brigham and Women’s Hospital in Boston. “Involvement of multiple sys tems can be suggestive of lupus.”

Even more troubling is that the cause of lupus is unknown. Genetics, hormones and environment play a role, but in most cases, the exact cause re mains a mystery.

Disparity

There are 1.5 million people with lupus in this country and 90% of them are women. The disease typically strikes between the ages of 15 and 44, the child bearing years. Race is a factor. Lupus is two to three times more prevalent among women of color than among

white women. African Americans are hit particularly hard. According to a study published in Arthritis and Rheuma tology, lupus affects one in 537 African American women.

Even more disturbing is that Black women are more likely to develop lupus nephritis, an adverse complication of the disease that targets the kidneys. In addition, death rates are higher in women of color.

Although lupus is more common in women, men, teens and children can also develop the disease.

Flares

Flares occur when symptoms get worse, making people feel sick. They may come and go and differ by the indi vidual. Sometimes flares occur without clear symptoms and are found only with laboratory tests. Others, however, have distinct signs such as pain, fever, rash and fatigue.

It’s important to learn your triggers. Overwork, infection and even expo sure to the sun can start a flare. It’s

4 Be Healthy | Fall 2022 The issue:

Testing

No two cases of lupus are alike, adding to the difficulty in correct di agnosis. In addition, it is somewhat a moving target. Symptoms come and go. Sometimes they are mild; other times they are severe. Some symptoms in an individual disappear altogether only to be replaced by different ones.

In addition to evaluation of symp toms, the doctor conducts blood and urine tests. For instance, protein in the urine may indicate lupus nephritis, which can result in kidney failure if not properly treated. In some cases, imag ing tests or a biopsy help confirm the diagnosis.

There is no one test to accurately diagnose lupus. However, a key test is called an ANA (antinuclear antibody) test. Interpretation is a bit tricky. A pos itive result may indicate a stimulated immune system, the characteristic of lupus. Most people with lupus have a positive ANA test; yet most people with a positive ANA do not have lupus, ac cording to Costenbader. If your ANA is positive, your doctor may advise more specific antibody testing.

“Work is being done on better tests,” Costenbader explained. Biomarkers are in development that are designed to result in earlier diagnoses.

Treatment

Medications are chosen based on one’s particular symptoms and severity of disease. NSAIDs, such as over-thecounter ibuprofen, help quell joint and muscle pain. But the backbone of med ications are steroids and antimalarials. Steroids may help reduce swelling and pain but are designated for short term use. Antimalarial drugs, on the other hand, are prescribed to treat joint pain, skin rashes and even lung inflammation.

In 2011, the Food and Drug Adminis tration approved belimumab (Benlysta), the first drug that was specifically devel oped for lupus. In July 2021, the FDA

Lupus

TYPES OF LUPUS

n Systemic lupus erythematosus: the most common

n Cutaneous lupus erythematosus: affects only the skin

n Drug-induced lupus: caused by certain medications and typically goes away once the medication is stopped

n Neonatal lupus: a rare type of lupus found in infants at birth. Symptoms generally disappear but some can have a rare but serious heart defect

approved anifrolumab (Saphnelo), the second targeted therapy to treat adults with lupus.

Prognosis

There is no cure for lupus. However, according to the Lupus Foundation of America, with effective treatment, about 90% of people afflicted have a normal life expectancy.

“If you don’t take your meds, how ever, your condition can get out of control,” Costenbader warned. Unfor tunately, adherence to medications is lacking in some people. A recent study published in The Rheumatologist found that in a group of adult patients in a Cal ifornia clinic, only 58% of those studied

baystatebanner.com/category/health/be-healthy | Be Healthy 5 recommended to contact your doctor to see if an adjustment in the treatment plan may be necessary.
PHOTO: EMILY OAKES AND JACK ELLRODT The issue:
Dr. Karen Costenbader, the director of the Lupus Program at Brigham and Women’s Hospital.
continued, page 6

The issue: Lupus

adhered to their medication at least 80% of the time. Older age, white race and three or more visits to the rheuma tologist were associated with better ad herence. Costenbader has found similar nonadherence in younger people.

The next step: Awareness

Although lupus is a significant dis ease with wide-ranging complications, it flies below the radar. Awareness is low. According to the Lupus Foundation of America, 63% of Americans surveyed have never heard of lupus or know little or nothing about the disease.

Even affliction of celebrities has not had a significant awakening. Selena Gomez had a kidney transplant due to lupus. Nick Cannon, the rapper and actor, suffered kidney failure and blood clots in his lung. People attributed the scars on Seal’s face to tribal config urations, but the scars as well as the bald head are the consequences of the disease.

A study to assess the awareness and understanding of lupus was conducted

jointly by Brigham and Women’s Hospi tal, Northeastern University, and other organizations in Boston and Chicago. The researchers designed a program called “Lupus Conversations” to dissem inate culturally appropriate education about lupus. They found among other things that there were significant gaps in knowledge about the signs, symptoms and psychosocial effects of lupus in the African American communities. Similar lack of awareness was evident among some health professionals as well.

The researchers highlighted the importance of the community voice and social networks to disseminate information.

Inclusion

Costenbader emphasized the need for greater participation of minorities in clinical studies and clinical trials as well.

That’s particularly true when it comes to medications. “Drugs may not work as well in Blacks if they are not included in the trials that test them,” she explained.

“There’s an unmet need.”

Coordinating care

Patients with lupus are often treated by several different types of doctors because of the complexity of the disease. Rheumatologists, who specialize in diagnosing and treating diseases of the joints and muscles, coordinate the care.

TYPE OF DOCTOR SPECIALTY

Dermatologist

Nephrologist

Perinatologist

Cardiologist

Pulmonologist

Neurologist

Ophthalmologist

Diseases of the skin

Diseases of the kidney

High r isk pregnancies

Diseases of the hear t

Diseases of the lungs

Diseases of the brain

Diseases of the eye

SIGNS AND SYMPTOMS

The signs and symptoms of lupus vary and depend on the body systems affected. That’s why no two cases are alike. The most common signs and symptoms include:

n Fatigue

n Fever

n Muscle and joint pain, stiffness and swelling

n Rashes, particularly butterflyshaped rash on the face

n Sensitivity to sunlight

n Fingers and toes that turn white or blue when exposed to cold or during stressful periods

n Shor tness of breath

n Chest pain when breathing deeply n Dr y eyes or eye inflammation

n Headaches, confusion and memory loss

n Hair loss

n Kidney problems

n Anemia

n Mouth sores

RISK FACTORS

n Gender: more common in women

n Age: more frequently diagnosed between the ages of 15 and 45

n Race: more common in African Americans, Hispanics and Asians

6 Be Healthy | Fall 2022
PHOTOS: ADOBE STOCK

Lupus and its effects

Lupus is a chronic autoimmune disease and can damage any part of the body.

BRAIN

HAIR

EYES

SKIN

HEART

of the sac lining of the heart), high blood pressure,

BLOOD

KIDNEYS

Inflamation, blood

urine, nephritis, kidney

MUSCLES AND JOINTS

stiffness, swelling

HANDS AND FEET

and

white

The issue: Lupus
ILLUSTRATION: J. STORIN
Loss/thinning
Rashes, butterfly rash on face MOUTH Sores/ulcers
Pericarditis (inflammation
atherosclerosis
Anemia, blood clots
Headache, confusion, memory loss
Dryness LUNGS Chest pains, shortness of breath
in
failure
Fingers
toes turn
or blue
Pain,

HEALTH,

SQUARE HEALTH CENTER

8 Be Healthy | Fall 2022 Percentage of cases occurring in women Prevalence in women of color Average number of years for correct diagnosis Percentage of people incorrectly diagnosed Common ages at diagnosis Number of Americans afflicted 90% 2-3x 6 63% 15-45 1.5m By the numbers: Lupus YOUR
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with lupus

baystatebanner.com/category/health/be-healthy | Be Healthy 9 PHOTO: ADOBE STOCK Focus: Living
Improvements in care » Pregnancy 10 » Growing up with lupus 12 » Heart health 14 » Not women only 16 Although lupus is a serious chronic disease, with development of newer treatment and increased understanding of the disorder, 90% of those afflicted have a normal lifespan.

The wonder of childbirth

Increased success in women with lupus

AT ONE TIME, WOMEN WITH LUPUS WERE ADVISED NOT TO HAVE CHIL DREN. THE RISK TO THEIR HEALTH AND THAT OF THEIR FETUS WAS TOO HIGH.

Fast forward a number of years and the story has changed. The PROMISSE Study conducted in New York in 2011 found that 80% of lupus pa tients had a favorable pregnancy outcome.

It takes some planning, though. Every preg nancy of a woman with lupus is considered high risk and requires close monitoring by a perina tologist as well as her rheumatologist. A perina tologist is an obstetrician/gynecologist specially trained in high risk pregnancies. The focus of the team is to keep the mother and baby safe before, during and after birth.

Every pregnancy of a woman with lupus is considered high risk and requires close monitoring by a perinatologist as well as her rheumatologist.

It may sound incongruous but the first step in planning a family is birth control, largely to avoid an unanticipated pregnancy. The type of contra ceptive is important as well. For instance, estro gen-based birth control is not recommended for some women with lupus, explained Dr. Laura Tarter, the director of Pregnancy and Reproduc tive Health at Brigham and Women’s Hospital Lupus Program.

Women who have a condition called APS

(anti-phospholipid syndrome) have a higher risk of blood clots and are placed on blood thinners to reduce the risk of a stroke or heart attack. According to Women’s Health, estrogen is also linked to the increased risk of blood clots during pregnancy. Progestin-only contra ception, on the other hand, is a safer alternative.

The six month plan

According to the Lupus Foun dation of America, pregnancy should be considered only after a six-month period of time with out flares or complications of lupus. Pregnancy during a flare could result in a miscarriage or stillbirth.

A change in medication is typically required. “Certain medications are dangerous to developing babies,” explained Tarter, and may cause birth defects. They are replaced by meds that are considered pregnancy compatible. She cautioned against stopping all medications, a misperception held by some women.

Physical changes during pregnancy can often mirror those caused by an uptick in dis ease activity. For instance, joint pain is common in both conditions. A checkup at least once every trimester can see trends in lab tests for signs of active disease, explained Tarter.

10 Be Healthy | Fall 2022
PHOTO: ADOBE STOCK
FOCUS: Living with lupus

Risks

High blood pressure, diabetes and obesity all add to the risk of pregnancy, but two risks are of particular concern. A form of kidney disease called lupus nephritis occurs in up to 40% of people with lupus and is associated with higher rates of maternal and fetal complica tions. Nephritis is caused by inflamma tion and can result in kidney failure if not treated. Patients are followed closely by nephrologists.

Nephritis often occurs with another common complication called preeclamp sia, which results in high blood pressure and puts stress on the heart, lungs and other organs.

Two additional types of antibodies (anti-SSA and anti-SSB) are linked to a rare condition called neonatal lupus in which the baby is born with lupus. It typ ically resolves itself within six months, but in some cases the baby is born with a heart block that causes a slow heartbeat. “We test the baby’s heart in the second trimester,” Tarter explained. Prenatal treatment can be rendered if necessary.

Close monitoring

Some women with lupus have been told that they could never get pregnant. Tarter pushes back. “There’s a very small percentage that might not be able to give birth,” she explained, “but most do well.”

“It takes close monitoring,” she emphasized. “You do so much better when the pregnancy is planned and coordinated.”

Your health matters

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FOCUS: Living with lupus baystatebanner.com/category/health/be-healthy |
Dr. Laura Tarter, director of Pregnancy and Reproductive Health at Brigham and Women’s Hospital Lupus Program.
It takes close monitoring. You do so much better when the pregnancy is planned and coordinated.”
— Dr. Laura Tarter
Stay informed. Take charge. Be healthy. PHOTO: COURTESY OF DR. LAURA TARTER

Living with lupus

Growing up with lupus

Symptoms can be hidden

GAIL GRANVILLE NOW KNOWS WHY AS A KID SHE PREFERRED THE SHADED PONDS TO THE SUNNY BEACHES OF CAPE COD.

Granville, 68, had lupus, but she did not know it until she was 34 years of age. That’s not unusual. It takes sev eral years to diagnose lupus, according to the National Lupus Foundation. The symptoms so closely mirror other diseases.

She always had migraines. That’s not unusual. About 20% of people with lupus have migraine-like head aches. She was sensitive to the sun. “I had a lot of rashes,” she explained, but her family attributed them to allergies or poison ivy. They thought she was just a sickly child.

There was no history of lupus in her family, but other autoimmune diseases were well represented. One sister had rheumatoid arthritis; another had multiple sclerosis; and still another had scleroderma.

According to researchers at Johns Hopkins, it’s clear that genetics play a role in autoimmune diseases, but the exact role is not fully understood since other factors come into play as well. What is known, however, is that women seem to be affected more frequently.

But a positive ANA (anti-nuclear antibody) test, joint pain, and another test called anti-Ro (SSA) eventually confirmed the diagnosis.

Granville explained that one of her most regretted consequences of the disease is that she could not carry her pregnancies to term. Actually, that

was fairly typical at that time. Women with lupus were advised not to have children, but the PROMISSE Study in 2011 found that with careful planning and monitoring, 80% of lupus patients

had a favorable pregnancy outcome. Her most prominent symptom now is constant pain mostly in the joints. “I’ve learned to push through it,” she said. She attributes the pain to fibromyalgia as well. Fibromyalgia is a disorder that can occur alone or sec ondary to connective tissue disorders such as lupus. Studies suggest that about 25% of people who have lupus also have fibromyalgia, according to researchers at the Hospital for Special Surgery.

As the years have passed, she ex plained, it’s a battle to deal with both lupus and older age. Those steps in her house have taken their toll. She said she experiences greater fatigue, chronic pain, falls and lupus fog, or diminished cognitive functioning. Osteoporosis has set in due to age and remnants of steroid treatment. Basic housecleaning is more difficult, and she prefers now not to drive.

Yet Granville is not stopping. She is a member of Women of Cour age, a support group for lupus that, until the pandemic, met regularly at Codman Square Health Center. She participated in a research program called “Lupus Conversations,” a study to assess the awareness and under standing of lupus in the minority community.

She offers words of encouragement to women suffering with lupus. The disease is deceiving. “You look well, but that doesn’t mean you’re doing well,” she said. “Get support from other lupus patients. You have to put yourself as number one.”

12 Be Healthy | Fall 2022 FOCUS:
PHOTO: ADOBE STOCK
You look well, but that doesn’t mean you’re doing well. Get support from other lupus patients. You have to put yourself as number one.”
— Gail Granville

Everyone’s lupus journey is…

different

Community health centers.

With you at every step.

Living with lupus

The heart of the matter

Heart disease and lupus

THERE’S A COMMON MISPERCEPTION THAT THE MAJOR CAUSE OF DEATH IN PEOPLE WITH LUPUS IS THE DISEASE ITSELF. NOT SO. ACTUALLY, IT’S CORONARY ARTERY DISEASE, THE MOST COMMON FORM OF HEART DISEASE.

Heart disease is the number one cause of death in this country, accord ing to the Centers for Disease Control and Prevention. There is a difference by gender, though. The disease is more common in men under the age of 55. Premenopausal women are usually pro tected. Over the age of 55, however, the risks in both genders are similar.

Young women with lupus, however, are not afforded that protection. “Heart disease is about three times higher in lupus, particularly in the young,” explained Dr. Brittany Weber, a car dio-rheumatologist with the Lupus Program at Brigham and Women’s Hos pital. “Studies show that young people with lupus have increased plaque in their arteries compared to those without lupus,” she continued.

The plaque found in lupus, however, is typically not caused only by the risk factors cited by the Framingham Study — age, high blood pressure, smoking, obesity, high cholesterol. Inflammation is the culprit here. Inflammation dam ages the inside of blood vessels, resulting in the buildup of plaque, which can lead to heart attacks and strokes.

Another factor increases the risk of coronary artery disease in some people with lupus. A syndrome called APS (an tiphospholipid syndrome) causes blood clots that can obstruct the flow of blood in the arteries that increase the risk of a heart attack and stroke.

Actually, no part of the cardiovascu lar system is spared. Lupus attacks not

Studies show that young people with lupus have increased plaque in their arteries compared to those without lupus.”

only the blood vessels, but also the heart valves and the heart muscle itself. A fairly common affliction is pericarditis, or inflammation of the sac lining of the heart. Pericarditis is characterized by sharp pain and rapid heartbeat.

Treatment

Ironically, some medications used to treat lupus may add to the problem. Recent research published in the Na tional Institute for Health and Care Research found that the risk of cardio vascular disease increases with the dose and duration of steroid treatment. Ste roids can cause high blood pressure, di abetes and high cholesterol, all of which can lead to heart disease. Because of this, there is a push to keep steroid doses as low as possible and use “steroid-spar ing” medications instead.

Disparity

People of color with lupus are hard hit. “Blacks and Hispanics have an ele vated risk of stroke,” explained Weber. Studies published by rheumatologists at Brigham and Women’s Hospital found that Black patients with lupus in this country covered under Medicaid are at a 34% higher risk of stroke than white patients, while Hispanics had a 25% greater risk.

The bottom line

The good news is that if lupus is con trolled and treated early, the risk of car diovascular disease decreases, explained Weber. “Living with Lupus” by the Lupus Program at Brigham and Wom en’s Hospital offers tips to decrease the chance of developing heart disease. Stop smoking; aim for 30 minutes of exercise a day; stock up on fruits and veggies; control your blood pressure, weight and cholesterol. Manage your stress.

“If lupus is controlled, it is easier to manage heart disease,” says Weber.

14 Be Healthy | Fall 2022
PHOTO: COURTESY OF BRITTANY WEBER, M.D.
FOCUS:
Dr. Brittany Weber, cardio-rheumatologist with the Lupus Program at Brigham and Women’s Hospital.

Lupus and the heart

Young women often victims

IF YOU ASKED MEGAN CORBIN TO DESCRIBE A TYPICAL HEART ATTACK VICTIM, SHE UNDOUBTEDLY WOULD NOT INCLUDE HERSELF. YET, AT THE AGE OF 30, THAT’S EXACTLY WHAT HAPPENED TO HER.

The symptoms started almost two weeks prior to her attack. Corbin said she felt as though she had acid reflux that probably could be alleviated by a healthy dose of ginger ale. She ignored the discomfort.

But that morning in July she was awakened by the pain. “It felt like pres sure in my chest,” she explained. Deep breathing didn’t help. The symptoms worsened. She broke into a cold sweat and felt nauseous.

Eventually her left arm and half of her right arm went numb. She lay on the cool tiles of the bathroom floor, thinking that would alleviate the sweats.

After roughly 20 minutes, and the in sistence of her husband, she agreed to go to the emergency room. It’s a good thing she did.

An EKG confirmed the diagnosis. Corbin was airlifted to a larger hospital for more intensive treatment. She said that one artery in her heart was com pletely blocked. A stent was inserted to restore the circulation.

A heart attack at such a young age is unfortunately becoming increasingly common, and Black women in their 20s and 30s are more often the victims, ac cording to a study presented at the Amer ican College of Cardiology’s 70th Annual Scientific Session. Obesity and high blood pressure are the typical causes.

As far as Corbin knew, however, she was in relatively good health. She didn’t

smoke; her BMI was normal. She knew of no history of heart disease in her family. She said that her diet was healthy. She ate lots of fruits and veggies. She broiled instead of fried. She was a dancer, which kept her physically active.

But two problems surfaced during her workup in the emergency room. Her blood pressure and cholesterol were elevated, and both are risk factors for a heart attack. Another condition may have played a role, and is often referred to as a silent risk. Corbin has lupus, an autoimmune disease that is more common among Black females, and attacks at a young age. Lupus typically

targets several body systems, including the skin, joints and kidneys.

But it can also damage the blood cells as well as the heart. Researchers for the Lupus Research Alliance compared the blood vessels of people who didn’t have lupus to those afflicted. They found that the arteries of those with lupus were more likely to be stiff, inflamed and contain plaque, a fatty buildup that can block the arteries of the heart, resulting in a heart attack or stroke.

According to Johns Hopkins, the risk of a heart attack is increased seven to nine-fold in people with lupus, particularly young women.

According to Johns Hopkins, the risk of a heart attack is increased seven to nine-fold in people with lupus, particularly young women.

Corbin participated in a cardiac rehab program. She takes meds for her heart and is closely monitored to pre vent complications. She is now a spokes person for the American Heart Associa tion’s Go Red for Women campaign.

In spite of all that’s happened Corbin counts her blessings. “I might not have been evaluated for a heart attack because of my age,” she said. She en courages other women of color to take their health seriously. “If something seems off, go to the doctor. If one doctor doesn’t listen, then go to another.”

The experience has made her reach for her dreams. She opened a dance studio she calls Alter Ego.

More importantly, though, she now recognizes the symptoms of a heart attack, and that age is just a number.

baystatebanner.com/category/health/be-healthy | Be Healthy 15
FOCUS: Living with lupus PHOTO: COURTESY OF AMERICAN HEART ASSOCIATION

Yet, in some ways, Burton said he had it easier. It can take years to accu rately diagnose lupus, but for him, it took a matter of months.

It didn’t faze Burton that he had a so-called “woman’s disease.” An avid Seinfeld fan, he remembers an episode during which the character George Costanza was convinced he had lupus. He also knew that the singer Seal was afflicted.

Regardless, Burton is not com plaining. He recently celebrated an anniversary of sorts. It’s been 10 years since his diagnosis. His last flare was five years ago, but that doesn’t mean he doesn’t suffer a hiccup now and then. He took his seven-year-old son swim ming recently. Although he took all the necessary precautions and lathered on sunscreen to protect his skin, the sun got the better of him. “I was wiped out,” he explained.

Lupus: Not women only

One man’s story

AT 24 CHRIS BURTON HAD HIS WHOLE LIFE AHEAD OF HIM. HE WAS RECENTLY MARRIED, HAD A COUPLE OF DEGREES UNDER HIS BELT, AND ALREADY DETERMINED THAT THE MINISTRY WAS HIS VOCATION.

But his path took a sudden and unex pected turn.

A severe bout of pneumonia accom panied by hair loss, joint pain and blue fingers, which is indicative of Raynaud’s disease, was the first indication that something was amiss. Burton thought it was just a bad cold. But three months later pneumonia struck again, this time causing chest pain and clots in his lungs.

“It looked like someone spilled M&Ms all over my lungs,” he explained referring to his X-ray.

This scenario is not unusual for lupus. Lungs are often a target for the disease resulting in inflammation, fluid buildup and pain.

Burton spent the entire month of February in the hospital. “They threw the book at me,” he explained, referring to the myriad of tests to determine the diagnosis. He was tested for HIV, can cers and a slew of other conditions. But the antinuclear antibody test, or ANA, told the story. A positive test indicates an overactive immune system, accord ing to Mayo Clinic.

Burton takes it one day at a time. His condition is controlled by the first tar geted therapy for lupus (Benlysta). He engages in low-impact workouts every week using rowing machines and a sta tionary bike. Free weights three times a week let him pump iron, but not too in tense, he said. Overexertion can result in a flare.

He changed his diet as well. Al though there is no set eating plan for a person with lupus to follow, he sticks to plant-based foods. No meat, no dairy. He prefers purple foods, like blackber ries and blueberries.

Burton said he recognizes the value of a support system to help cope with the disease. “It’s critical,” he explained. He credits his wife — six months into his marriage — for her support through his journey. He is paying it forward. He serves as an ambassador for the Lupus Foundation of America. He also devel oped a local support group.

He has a message for those with lupus. “It’s not a death sentence,” Burton said. “You can live a full and long quality of life. People tend to lose sight of that.”

“It’s not the end,” he emphasized.

16 Be Healthy | Fall 2022
PHOTO: COURTESY OF CHRIS BURTON Chris Burton, shown with his family, was diagnosed with lupus more than 10 years ago at the age of 24.
FOCUS: Living with lupus

CHERISH YOUR HEARTBEAT

Monitor your blood pressure to help prevent a heart attack or stroke. Do it for your family. Visit Heart.org/Risk or scan the QR code to learn more.
™ Prevent a heart attack or stroke.
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Healthy Steps

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Eat right, stay active, live well There is no particular diet a person with lupus is advised to follow. A well-rounded plan of fruits, veggies, whole grains and healthy fats will do. Consumption of processed foods, saturated fats and added sugars should be kept to a minimum. » Nutrition 20 » Physical activity 22 PHOTO: ADOBE STOCK

What’s for supper?

Lupus and nutrition

THERE IS ACTUALLY NO PARTICULAR DIET A PERSON WITH LUPUS NEEDS TO FOLLOW. IT’S WIDE OPEN — YOU CAN PICK AND CHOOSE FROM A PANOPLY OF SORTS. Just follow the oft-repeated regime. Eat fruits and veggies, whole grains and healthy fats. Limit consumption of processed foods, saturated fat and added sugars.

The good thing is if you follow a healthy eating plan, it benefits the heart as well. This is important since heart disease is the number one cause of death in people with lupus.

There are some situations that require particular attention, though.

Vitamin D

It is well established that vitamin D is essential for healthy bones. New research indicates that vitamin D may have an impact on the immune system as well. According to the Lupus Foundation of America, it may even play a role in the development and severity of some autoimmune diseases, including lupus.

The problem is that people with lupus tend to have low levels of vitamin D for a number of reasons. Darker skin tones, certain medical conditions and even steroids, a common treatment for those with lupus, lend to its deficiency.

Here’s a dilemma, though. The best source of vitamin D is the sun. Yet, people with lupus are advised to avoid sun exposure. The ultraviolet rays of the sun can activate lupus flares, resulting in fatigue, joint pain and rashes. It’s best to get your D from other sources, such as salmon, egg yolks or fortified

foods. Daily supplements are probably the easiest. The National Institutes of Health recommend a daily dose of 600-800 IU a day for adults.

Kidney disease

Up to 50% of people with lupus have lupus nephritis, a form of kidney disease. Inflammation damages the small filters in the kidney resulting in loss of function. As a result, some cases may demand cutting back on foods high in protein, such as dairy products, legumes and meat or foods high in potassium, such as avocados, bananas and cantaloupe.

Some foods you should avoid Alfalfa sprouts seem innocuous. They’re a staple at salad bars and ornament for many a delectable

sandwich. However, alfalfa sprouts contain an amino acid that can increase inflammation by stimulating the immune system. As a result, people with lupus should avoid alfalfa sprouts altogether, according to specialists at Johns Hopkins Lupus Center.

Garlic is a favorite commonly used to enhance the flavor of foods. But scientists believe that garlic contains three substances that can stimulate the immune system. A small amount is not harmful, but it’s best to turn to alterna tives to add zest to the flavor of foods.

The bottom line

Develop a healthy eating plan that works for you. Choose foods you like. If you need advice, a dietitian can help build a healthy diet tailored to your needs.

20 Be Healthy | Fall 2022 HEALTHY STEPS: Nutrition
PHOTO: ADOBE
STOCK

Care that understands

Carney Hospital is proud to welcome Dr. Rohit Dixit to the Carney Hospital

Primary Care Practice.

Dr. Dixit has been a practicing Internal Medicine physician since 2015. His clinical interests include preventative medicine, clinical nutrition, obesity management, celiac disease and inflammatory bowel disease. Dr. Dixit is fluent in English, Hindi and Punjabi.

Dr. Rohit Dixit

call our office to book your next appointment, 617-506-4970. New patient appointments can be booked within 24 hours. Please call today to schedule.

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OLYMPICS OUT OF REACH?

NOT NECESSARILY

Lupus does not necessarily relegate you to non-compet itive sports. Shannon Boxx proved that several years ago. Boxx, a former Olympic soccer player, was diagnosed with lupus in 2007 after struggling with muscle and joint pain and fatigue. Yet, she went on to earn gold in the 2012 Olympics as part of the U.S. women’s soccer team.

In an interview with CNN, Boxx explained that a mixture of medication and alterations to her training routine al lowed her to compete. Rest days kept her flares under control.

Boxx won gold medals at the 2004 Athens Olympics, 2008 Beijing Olympics and 2012 London Olympics.

Physical activity and lupus

Your own design

REGULAR PHYSICAL ACTIVITY MIGHT NOT BE HIGH ON THE TO-DO LIST OF PEOPLE WITH LUPUS. THAT’S UNDERSTANDABLE GIVEN THE SIDE EFFECTS OF THE DISEASE. MUSCLE PAIN, MUSCLE WEAKNESS AND FATIGUE TAKE A TOLL.

The emotional impact is high as well. A recent study published in Medicine found that 25% suffer from major depression and 37% from anxiety.

Clearly not a good recipe for exercise.

Yet, it is these very complaints that war rant physical activity. It seems a bit incongru ous, but movement is an elixir of sorts. Stiff, painful joints are soothed and lubricated with range of motion activities. Strengthen ing exercises beef up musculature.

But mental health may benefit even more. According to the Anxiety and Depression Association of America, exercise has shown to be effective at reducing fatigue, and serves as a medication of sorts for some people with depression and anxiety. A study published in Arthritis Care & Research found that lack of activity may have a greater impact on those with lupus than previously understood. Physical inactivity in non-white women with lupus at baseline of the study was highly pre dictive of the onset of depression over the next two years. The results suggest an urgent need to reduce sedentary behavior in this high-risk population.

The Physical Activity Guidelines for Americans recommends 150 minutes of moderate intensity activity a week for adults, but that’s more of a target for those starting out. Caution must be taken when initiating an exercise regime. It is wise to first consult

your rheumatologist or physical therapist. Also, you might have to scale it back a bit during a flare when symptoms worsen.

Low impact activities are good for a starter. Try walking, biking, swimming, yoga and tai chi.

Another main reason to exercise regularly is to maintain the health of your heart. Ex ercise lowers blood pressure and reduces the

Physical inactivity in non-white women with lupus … was highly predictive of the onset of depression over the next two years.

risk of diabetes, obesity and inflammation — all highly correlated to heart disease. This is particularly critical for women with lupus. The risk of a heart attack in women with lupus aged 35 to 44 is 50 times greater than that of comparable women without lupus, according to Johns Hopkins Medicine.

The good news is that there is not a par ticular program to follow. Just as no two cases of lupus are alike, no two exercise plans are identical. You develop a plan that works for you. Set your own pace.

You call the shots.

22 Be Healthy | Fall 2022 HEALTHY STEPS: Get physical PHOTOS: WIKIPEDIA, ADOBE STOCK
Olympian Shannon Boxx

Your health is everything to us

We’re a health plan focused on giving our members all they need to live their healthiest lives. Whether it’s access to behavioral health support and counseling, wellness programs to activate a vibrant hobby, Recovery Coaches, or access to acupuncture, we are here with a full spectrum of care and coverage to empower a healthier you.

allwayshealthpartners.org

YMCA of Greater Boston’s Specialty Health offerings are designed to educate and empower those with health-related goals and concerns through expert instruction, tailored exercise and peer support.

The Y’s Specialty Health programs are taught by expert Team-Y Coaches and are available in-person at most branches or virtually through YMCA GO, our online health and wellness platform.

the generosity of local funding partners, many of these programs are offered at no cost to participants.

Where there’s the Y, there’s a way to learn about healthier living.

more at ymcaboston.org/SpecialtyHealth.

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