Accomodating people with lupus

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Job Accommodation Network

ACCOMMODATING PEOPLE WITH LUPUSBy Batiste, J.D., and Beth Loy, Ph.D. Preface

There are an estimated 1,400,000 to 2,000,000 people with lupus, affecting 1 out of every 185 Americans. Most individuals are diagnosed with lupus between the ages of 20 and 40. Therefore, many individuals with lupus are members of the workforce. These statistics, coupled with the requirements of the Americans with Disabilities Act (ADA) show why knowing about workplace accommodations for people with lupus is important.

When considering accommodations for people with lupus, the accommodation process must be conducted on a case-by-case basis. Symptoms caused by lupus vary from person to person, ranging from mild symptoms that affect only a few organs to life-threatening symptoms that can cause death. When determining effective accommodations, the person's individual abilities and limitations should be considered and problematic job tasks must be identified. Therefore, the person with lupus should be involved in the accommodation process.

Not all people with lupus will need accommodations to perform their jobs and many others may need only a few accommodations. For those who need accommodation, the following pages provide basic information about common limitations, symptoms, useful questions to consider, and accommodation possibilities. The following is only a sample of possibilities to consider; numerous other solutions and considerations may exist.

In addition to accommodation ideas, the following material includes information regarding some of the products available to accommodate people with lupus. The information represents a sample of the possible products and vendors available. Numerous other products and vendors may exist.

Also included in this publication is a list of resources for additional information.

LUPUS

The following information regarding lupus was edited from several sources, including many of the resources listed in the resource section of this publication. The information is not intended to be medical advice. If medical advice is needed, appropriate medical professionals should be consulted.

What is lupus?

Lupus is a chronic, autoimmune disease that causes inflammation of various parts of the body. The body's immune system normally makes proteins called antibodies to protect the body against viruses, bacteria, and other foreign materials called antigens. In an autoimmune disorder such as lupus, the immune system loses its ability to tell the difference between antigens and its own cells and tissues. The immune system then makes antibodies directed against "self." These antibodies, called "auto-antibodies," react with the "self" antigens to form immune complexes; individuals with lupus produce too many antibodies. The immune complexes build up in the tissues and cause inflammation, injury to tissues, and pain by attacking functioning organs, especially the skin, joints, blood, and kidneys. Lupus is a condition where the body's defense mechanism goes into overdrive and starts to attack itself. There are three types of lupus:

1. Discoid lupus erythematosus (DLE) involves somewhat round, scaly, and red patches on the skin. Although these patches are not usually itchy or painful, alopecia (hair loss) and sensitivity to the sun can occur.

2. Systemic lupus erythematosus (SLE), "the disease of a 1000 faces," can affect almost any organ of the body and is usually more severe than DLE.

3. Drug induced lupus (or drug related) refers to a syndrome that occurs after the use of certain prescription drugs. The symptoms are similar to those of SLE, but once the drug or substance is withdrawn, the symptoms generally disappear.

The name "lupus" comes from Latin and means wolf, refering to the erythematous red ulcerations on the face that are commonly associated with lupus.

What are the symptoms of lupus?

Although lupus can affect any part of the body, the most common symptoms are butterfly-shaped skin rashes; arthritis; nephritis (kidney problems); inflammation of the lungs, heart, or abdominal cavity; and gastrointestinal disorders. Other symptoms include fatigue, fever, impaired vision, weight fluctuation, headaches, frequent infections, anemia, alopecia (hair loss), seizures, and photosensitivity. No single set of symptoms is uniformly specific to lupus and no laboratory test can prove lupus conclusively; symptoms may disappear for no apparent reason and remain in remission for weeks, months, or even years. Lupus may also be complicated by Raynaud's Phenomenon, a disorder that constricts the blood vessels in the fingers, toes, ears, and nose. Individuals notice skin discoloration, mild tingling, and numbness upon exposure to cold. When blood vessel spasms become more sustained, pain erupts in the fingertips and they ulcerate. Ulcerated digits can become infected and, with continued lack of oxygen, gangrene can result.

Sjogren's Syndrome, a condition that inflames the salivary glands, may also affect individuals with lupus. This inflammation causes a condition known as Xerostomia (dry mouth) where saliva is produced in low quantities and mouth ulcers are likely. Persons with lupus may have problems eating, swallowing, and speaking.

Forty to 60 percent of people with lupus have skin problems, one of which may be photosensitivity. Photosensitivity in lupus is usually caused by the sun's ultraviolet (UV) light: UVA, UVB, and UVC. The ozone in the stratosphere filters out UVC; window glass filters out UVB. Ultraviolet sensitivity may be present from the onset of lupus or it may develop over time. Exposure to ultraviolet light can flare new skin lesions, increase fatigue and weakness, and cause nausea and vomiting.

What causes lupus?

Though the cause of lupus is unknown, environmental factors, estrogen levels, genetics, and a history of a virus may be contributors. Current research indicates that auto-immune disorders such as lupus result from faulty communication between B cells and T cells; B cells normally produce antibodies or stop producing them on direction from T cells. It is believed that in lupus, this communication goes awry and B cells may not get a clear message from T cells to stop making antibodies.

Who gets lupus?

Though lupus can occur at any age and in either sex, it occurs most often in women between the ages of 20 and 40; nine times more women get lupus than men. More people have lupus than AIDS, cerebral palsy, multiple sclerosis, sickle-cell anemia, and cystic fibrosis combined. Lupus can be triggered at many different times, including after puberty, childbirth, menopause, trauma, or a prolonged course of medication.

How is lupus treated?

In the absence of a cure, treatment of lupus is primarily tailored to symptom relief. Many of the drugs used to treat people with lupus have serious side effects that must be weighed against the effects of lupus. Three of the most common treatments reduce the inflammation of affected tissues and suppress abnormalities of the immune system: 1. Anti-inflammatory drugs relieve the symptoms of lupus by reducing the inflammation responsible for pain and discomfort; 2. Anti-malarial drugs, used for the treatment of malaria, are particularly effective in the treatment of lupus arthritis, skin rashes, and mouth ulcers; and 3. Cytotoxic chemotherapies, similar to those used in the treatment of cancer, are used to suppress the immune system.

QUESTIONS TO CONSIDER WHEN DETERMINING ACCOMMODATIONS

What symptoms or limitations is the individual with lupus experiencing?

How do these symptoms or limitations affect the person and the person's job performance?

What specific job tasks are problematic as a result of these symptoms and limitations?

What accommodations are available to reduce or eliminate these problems? Are all possible resources being used to determine possible accommodations?

Has the employee with lupus been consulted regarding possible accommodations?

Once accommodations are in place, would it be useful to meet with the person with lupus to evaluate the effectiveness of the accommodations and to determine whether additional accommodations are needed?

Do supervisory personnel and employees need training regarding lupus, other disability areas, or the Americans with Disabilities Act?

ACCOMMODATION CONSIDERATIONS FOR PEOPLE WITH LUPUS

(Note: People with lupus will develop some of these limitations/symptoms, but seldom develop all of them. Limitations will vary among individuals. Also note that not all people who have lupus will need accommodations to perform their jobs and many others may need only a few accommodations. The following is only a sample of the possibilities available. Numerous other accommodation solutions exist as well.)

Activities of Daily Living:

Allow use of a personal attendant at work Allow use of a service animal at work Make sure the facility is accessible Move workstation closer to the restroom Allow longer breaks Refer to appropriate community services Provide access to a refrigerator

Cognitive Impairment:

Provide written job instructions when possible Prioritize job assignments Allow flexible work hours Allow periodic rest periods to reorient Provide memory aids, such as schedulers or organizers Minimize distractions Allow a self-paced workload Reduce job stress Provide more structure

Fatigue/Weakness:

Reduce or eliminate physical exertion and workplace stress Schedule periodic rest breaks away from the workstation Allow a flexible work schedule and flexible use of leave time Allow work from home Implement ergonomic workstation design Provide a scooter or other mobility aid if walking cannot be reduced

Fine Motor Impairment:

Implement ergonomic workstation design Provide alternative computer access Provide alternative telephone access Provide arm supports Provide writing and grip aids Provide a page turner and a book holder Provide a note taker

Gross Motor Impairment:

Modify the work-site to make it accessible Provide parking close to the work-site Provide an accessible entrance Install automatic door openers Provide an accessible restroom and break room Provide an accessible route of travel to other work areas used by the employee Modify the workstation to make it accessible Adjust desk height if wheelchair or scooter is used Make sure materials and equipment are within reach range Move workstation close to other work areas, office equipment, and break rooms

Migraine Headaches:

Provide task lighting Eliminate fluorescent lighting Use computer monitor glare guards Reduce noise with sound absorbent baffles/partitions, environmental sound machines, and headsets Provide alternate work space to reduce visual and auditory distractions Implement a "fragrance-free" workplace policy Provide air purification devices Allow flexible work hours Allow periodic rest breaks Allow work from home

Photosensitivity:

Minimize outdoor activities between the peak hours of 10:00 am and 4:00 pm Avoid reflective surfaces such as sand, snow, and concrete Provide clothing to block UV rays Provide "waterproof" sun-protective agents such as sunblocks or sunscreens Install low wattage overhead lights Provide task lighting Replace fluorescent lighting with full spectrum or natural lighting Eliminate blinking and flickering lights Install adjustable window blinds and light filters

Respiratory Difficulties:

Provide adjustable ventilation Keep work environment free from dust, smoke, odor, and fumes Implement a "fragrance-free" workplace policy and a "smoke free" building policy Avoid temperature extremes Use fan/air-conditioner or heater at the workstation Redirect air conditioning and heating vents Provide adequate exhaust systems to remove fumes from office machines Allow individual to wear a respirator mask Allow work from home

Seizure Activity:

Eliminate the need to use sharp objects Eliminate blinking and flickering lights Replace fluorescent lighting with full spectrum or natural lighting Use computer monitor glare guards, adjust monitor intensity and color, and decrease the cursor speed of the mouse Provide protective clothing/equipment Modify job tasks requiring fine finger dexterity Allow flexible work hours Allow periodic rest breaks Allow work from home

Skin Irritations:

Avoid infectious agents and chemicals Avoid invasive procedures Provide protective clothing

Sleep Disorder:

Allow flexible work hours Allow frequent breaks Allow work from home

Stress:

Develop strategies to deal with work problems before they arise Provide sensitivity training to coworkers Allow telephone calls during work hours to doctors and others for support Provide information on counseling and employee assistance programs

Temperature Sensitivity (including Raynaud's Phenomenon):

Modify work-site temperature Modify dress code Use fan/air-conditioner or heater at the workstation Allow flexible scheduling and flexible use of leave time Allow work from home during extremely hot or cold weather Maintain the ventilation system Redirect air conditioning and heating vents Provide an office with separate temperature control

Vision Impairment:

Magnify written material using hand/stand optical magnifiers Provide large print material, screen reading software, and large-size high resolution monitor Control glare by adding a glare screen to the computer Install proper office lighting Allow frequent rest breaks

EXAMPLE ACCOMMODATIONS FOR PEOPLE WITH LUPUS

A teacher with lupus was restricted from extended periods of typing. She was having difficulty creating lesson plans. She was accommodated with speech recognition software, an alternative keyboard, and a trackball.

A corporate trainer with lupus had difficulty standing and walking when giving presentations. The individual was accommodated with a scooter for getting around the work-site and a stand/lean stool to support her weight when standing.

A claims representative with lupus was sensitive to fluorescent light in his office and to the radiation emitted from his computer monitor. The overhead lights were changed from fluorescent to broad spectrum by using a special filter that fit onto the existing light fixture. The individual was also accommodated with a glare guard and flicker-free monitor.

An engineer with lupus was having difficulty completing all of his work in the office due to fatigue. The individual was accommodated with frequent rest breaks, a flexible schedule, and work from home on a part-time basis.

An executive secretary with lupus had severe back pain due to arthritis. The individual was accommodated with an adjustable height workstation to alternate between sitting and standing, an adjustable keyboard and mouse tray, and an ergonomic chair with lumbar support.

A health care worker with lupus had low vision. She was having difficulty viewing her computer screen and paper copies. The individual was accommodated with a large monitor, screen magnification software, hand/stand magnifier for paper copies, and a closed circuit television system.

A systems analyst with lupus had migraine headaches. The individual was moved from a cubicle office to a separate workspace away from distractions and noise. She was then able to use task lighting instead of overhead fluorescent lighting and adjust the temperature control when necessary.

PRODUCTS

There are numerous products that can be used to accommodate people with limitations. JAN's Searchable Online Accommodation Resource at <http://www.jan.wvu.edu/soar> is designed to let users explore various accommodation options. Many product vendor lists are accessible through this system; however, JAN provides these lists and many more that are not available on the Web site upon request. Contact JAN directly if you have specific accommodation situations, are looking for products, need vendor information, or are seeking a referral.

Sample products include:

Alternative Computer Input Devices

Adjustable Workstations

Glare Guards/Filters

Independent Living Aids

Non-Fluorescent Lighting

Stand/Lean Stools

Writing Aids

RESOURCES(This is a non-inclusive list)

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