n e F l a r e R e m i s s i o Do I havLupus March 2003 Suzi WojdyslawskiYOUT andPRINTING Table of Contents alk About Lupus 1Take Care and Take Action ID: 847869
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1 n e F l a r e R e m i s s i o same words
n e F l a r e R e m i s s i o same words when we talk about lupus. Please share itKaren Costenbader, MD, MPHVictoria Purcell-Gates, PhD Do I havLupus? March 2003 Suzi WojdyslawskiYOUT andPRINTING: Table of Contents alk About Lupus . . . . . . . . . . . . . . . . .1Take Care and Take Action . . . . . . . . . . . . . .3ords from A to Z . . . . . . . . . . . . . . .9Key Words . . . . . . . . . . . . . . . . . . . . . . . . .11Abbreviations . . . . . . . . . .
2 . . . . . . . . . . . . .40Common Tests
. . . . . . . . . . . . .40Common Tests . . . . . . . . . . . . . . . . . . . . . . .42or Testing . . . . . . . . .44mation . . . . . . .47 Plain Talk About Lupus Plain Talk About Lupus meaning of medical words that are used whenphrases used by medical people are special toto us. We hope this booklet will help you whenyou read or talk to people about lupus. What will you find in this booklet? are often found in patient booklets and hand-try to use plain Eng
3 lish. We also give a sen- Common Questio
lish. We also give a sen- Common Questions If you have lupus, you probably have manyquestions. How will I look and feel? You will look and feel well most of the time.have trouble understanding that you have a How long will this last? Lupus is a chronic disease. A chronic disease ischronic diseases can be managed.Lupus is not a simple disease. You cannot takeeases. Lupus can be a bit different for every Can anything be done? The good news is that you can g
4 et help to treat Take Care and Take Acti
et help to treat Take Care and Take Action Experts talk about four basic carsteps: êGet the facts. You need to know about lupus in order totake care of yourself. êHave a medical check-up on a regular basis. This type of disease changes over time andwith life events. You can take better carewhen you note and act on changes. Get support to help you with the emotionalside of illness. Illness can be hard on our minds and onour emotions. Managing a dis
5 ease is hardthe support we need. êMov
ease is hardthe support we need. êMove more and eat better. You will feel better if you are active and eatwell. This helps you build the strength and Get the facts about lupus and aboutlupus care Lupus is a disease of the immune system. Thereare two main types of lupus: 1.The first type of lupus is called lupus erythematosus SLE. SLE may affect several body systems.2.Another type of lupus is called lupus Discoid lupus affects the skin. About 15 percen
6 t of people with lupus have discoidAnyon
t of people with lupus have discoidAnyone can get lupus. Here are some factsêLupus is more common in Hispanic womenmore symptoms. Researchers do not know doctor is the best source of information. Youexpert. A rheumatologist is a doctor who treatslibrary. These libraries often have staff that canYour neighborhood librarian could also help Have a regular medical check-up Talk with your doctor When you manage a chronic disease like lupus,you will want to be
7 sure to see your doctor on aegular basis
sure to see your doctor on aegular basisÃeven when you are feeling well. can help you learn about lupus and how totake care of yourself. People with a chronic disease learn to pay Make a plan together You and your doctor can work together to findthe best way to treat all of your symptoms.Your treatment will depend on your symptoms. êYou might see someone who is trained inthe care and treatment of peopleÃs kidneys.êYou might see someone who is trained
8 inthe care and treatment of peopleÃs sk
inthe care and treatment of peopleÃs skin. Get support to help with the emotional side oillness You might think that your friends, family andmuch as you did before you had lupus.Sadness and anger are common reactions. êStay involved in social activities. Keep up toêBe good to yourself. Take care of your spir-itual side. Many people use prayer, relax-ation exercises, or meditation. êDecide what is most important. Spend yourMore hints . . .êConsider
9 joining a support group or seeingcounsel
joining a support group or seeingcounselor. Counseling is help from a pro-êShare how you are feeling with your familycauses problems. ve more and eat better In general, you will need to be as strong andhealthy as you can. Moving more and eating Move More êAn exercise program helps people withlupus. Exercise will give you more energydo. Exercise will help you build strong mus-daily tasks easier.êA physical therapist can help you plan anexercise program
10 . You can change yourexercise program de
. You can change yourexercise program depending on how youêEveryone needs to exercise. Exercise canhelp to improve and maintain your health. Eat Better êYou might need to take special care aboutlot of steroid medicine. êA nutritionist can help you decide on aêHealthy eating habits are very important. Lupus Words from A to Z glossary lists words people use when they talk or readabout lupus. The words are in A to Z order. How to Say the Word You will
11 see par word. Her ou will note that so
see par word. Her ou will note that some letters are in capital letters. Thispart of the word is said with a strong beat. Erythematosus. This is quite a mouthful. We show how is writtenas sis TE mik This helps you say the word out loud. The Word in a Sentence We use made-up names in the sentences. You mayDan has lupus and sees Dr. Lin forhis care. Each example sentence begins with a Key WordsLupus Words from A to Z a KYOOTa KYOOTRapid or sudden start of
12 symptoms. ItÃs The winter flu is an b
symptoms. ItÃs The winter flu is an because it starts suddenly. Aerobic exercise Exercise that helps the heart stay healthyand work better. Gene walks fast every day for aerobicexercise AG ra vateAG ra vateMake worse. her lupus when she isin the sun. More than a normal amount of hair loss. Linda experienced during herlast lupus flare. native Another choice or a different way. Susan runs on a treadmill indoors as an alternative to running outside in thes
13 un. and short of breath. Mary sometimes
un. and short of breath. Mary sometimes has trouble climbing makes herfeel very weak. Every year. Sonia always plans her breastdoesnÃt forget. Proteins in the blood that fight different The flu vaccine causes your body tomake its own that will fightthe flu. Drugs that kill or slow the growth ofgerms. Tony took to treat his ear Something that reduces swelling, heat and Mary takes drugs forher arthritis. problem with the joints that causes Mary finds
14 it hard to pick things upwhen her is b
it hard to pick things upwhen her is bad because ofthe pain and swelling in her hands. Atherosclerosis harden and narrow. This can cause heartattacks and strokes. Dr. Lin told Dan that he does not have atherosclerosis are not narrow or hard. Autoimmune disease au to im MUNE di ZEEZau to im MUNE di ZEEZmakes your immune system attack your LindaÃs kidneys are damaged because of autoimmune disease bac TEER ee abac TEER ee aGerms. got into the wound on Rob
15 ertÃshand and caused an infection. be N
ertÃshand and caused an infection. be NINEbe NINENot a danger. Tony was happy to learn that his tumor He was happy that it wasnot a danger to his life. bur SY tisbur SY tisInflammation of a bursa. A bursa is like a MaryÃs shoulder She cannot lift her arm to comb her hair Butterfly rash dry red rash on the cheeks and across Linda sometimes wears makeup whenshe has a butterfly rash Cardiovascular (kar dee oh VAS kyoo lar) Linda has a healthy cardiovascul
16 ar system because she exercises everyday
ar system because she exercises everyday. KAR tuh lijKAR tuh lijThe smooth covering on the end of bones. GeneÃs arthritis damaged the his fingers over the years. (KAT a rakts) Dan goes to the eye doctor every twoyears to check for Steroidscan cause if you take them for onic KRAH nikKRAH nikDoes not go away. Long term. Lupus is almost always a chronic disease. Linda will have it for the rest of Work or studies in a medical setting that Linda is in a
17 studyof a newtreatment for lupus. Compre
studyof a newtreatment for lupus. Comprehensive (kom pree HEN siv) Sonia has a comprehensive exam once a year. medical problem or disease. treatment for his Physical training to improve how long youcan exercise and how strong you are. Susan learned from her physical therapist. Contagious disease (kon TAY jus di ZEEZ)An illness that can spread from person to Lupus is not a colds are. ol kon TROLEkon TROLET. controls her lupus by takingmedicines and fol
18 lowing her treatmentplan. Cure To comple
lowing her treatmentplan. Cure To completely get rid of or stop a disease. Linda took antibiotics to cure infection. Today there is no cure for lupus. corticosteroids. Some signs are weight gainaround the face, as well as the upper back Dr. Santos told Linda that her facelooked a bit larger because her medicine (kyoo TAY nee us) Dr. Jones can see the psoriasis on ease and can be seen on the skin. mity change from the normal shape. Gene had to buy larger
19 gloves because mity his hands. Degenerat
gloves because mity his hands. Degenerative disease dee JEN ur a tiv di ZEEZdee JEN ur a tiv di ZEEZ The arthritis in TonyÃs knees has gotten worse over the years because degenerative disease osteoarthritis. Dermatologist (dur ma TAL oh jist)doctor and specialist who treats skinproblems. Robert goes to a dermatologist for his psoriasis. (dee TEE ree oh rate) Sonia now wears glasses because hereyesight has makes sugar into energy to keep you alive. Su
20 san is very careful not to eat foods Sus
san is very careful not to eat foods Susan has she takes high doses of steroids for her dy ag NOHSdy ag NOHSTfigurout what is causing health problems. Dr. Santos was able to lupus after seeing more symptoms over dy ag NO sisdy ag NO sis. Dr. Lin gave Dan a of lupusafter a check-up, some tests and hearing Shaped like a disk or round circle. The round red circles on MaryÃs facewere a sign of An amount of medicine. Dan takes one 10mg of steroidsevery mo
21 rning. If his lupus is acting uphe may n
rning. If his lupus is acting uphe may need a larger fective Works well. Linda wears a hat with a big brim. Thisis an fective way to keep the sun offher face. Environment (en VY ro ment)The place where we live. This includes the environment can cause an illness.It can also make symptoms better orworse. EP i sodeEP i sodeend. Susan had a short of chestpain. Erosions ee RO zhunsee RO zhunsSmall pits or holes in the cartilage or thebone. Dr. Jones looked
22 at the x-ray and saw erosions in RobertÃ
at the x-ray and saw erosions in RobertÃs hip. er ry THEM a toe siser ry THEM a toe sisRed rash on the face. This word is also in Susan has systemic lupus Her face rash is red when her lupus is inflare. (eg ZERT)To push or work hard. herself when she walks upan extra flight of stairs. Tgo without any food or drink. Dan was told to fast for 12 hours beforehis blood test. tired or weak feeling of the whole body. Dan felt a sense of fatigue and so hereste
23 d when he got home. Flare (flare)ease ar
d when he got home. Flare (flare)ease are worse. Linda had a flare of her lupus for twomonths. Able tomove with ease. Muscles and jointsthat stretch easily. Dr. Lin said that exercise would increase An eye disease where there is increasedpressure from the inside of the eye. Too much pressure over time can lead to Dan goes to the eye doctor every twoyears to check for He knowsthat high doses of steroids. process that uses a machine to clean theocess remo
24 ves harmful sub-stances from the blood w
ves harmful sub-stances from the blood when the kidneys Susan goes for eetimes a week because her kidneys weredamaged by lupus. Hormones chemicals are important for many body Cortisone is a hormone body. Prednisone is the pill form of this hormone Immune System germs and other intruders. immune system went right towork to fight germs when he got a deepcut. An illness that is caused by germs. Robert taught his son how to take care Swelling, redness, heat
25 and pain. This hap-react to illness. The
and pain. This hap-react to illness. The body sends extra oid medicines reduce way to give fluids or medicine directly Linda had an because her lupus was in flare. Happens to members of a family more Dr. Santos explained to Linda that her Linda has three To stop or hold back something. Susan takes a medicine to immune system. To give medicine by a needle under the Robert gives himself an insulin every day. Internal organs in TER nal OR gunin TER nal OR
26 gunThe inside parts of your body, such
gunThe inside parts of your body, such as. Lupus can harsome nal organs.Intravenous in tra VEE nusin tra VEE nusPutting fluids or medicine into a vein by Mary receives an from the visiting nurse. These letters are found at the end of aGreek language. Arth is a Greek word word now reads arthritis Here are other examples: means inflammation of thekidney. means inflammation of theheart muscle. The place where two bones come together.This is where we can
27 bend and move. Tony has trouble buttoni
bend and move. Tony has trouble buttoning his shirt are stiff. donÃt have any ÃKà words, but you may.Write your ÃKà words here: ____________________________________________________________________ strong band that holds a joint together. ony tore two knee when heplayed football. In a small area or only in one place. SusanÃs rash was She did not have it anywhere else. Long-term (long à term)For a long time, more than just weeks or SoniaÃs mother n
28 eeded m eafter she broke her hip. To co
eeded m eafter she broke her hip. To control or direct. DanÃs health care team taught him to his lupus with medicine andgood planning. medicine or drug to treat an injury, ill-ness or disease. Some must be prescribeddrug store over the counter. Linda gets her lupus at herlocal drug store. Able to move around. Surgery improved TonyÃs is now able to walk to the store. and strong. Linda takes time to rest when she has To watch and check something carefu
29 lly Dr. Santos sees Linda every two mont
lly Dr. Santos sees Linda every two months her lupus. Narcotic strong medicine or drug that takes away ou should not drive when you take a narcotic because you may fall asleep atthe wheel. Neurologic nur a LA jiknur a LA jikHaving to do with the nervous system. The One sign of a neurologic problem grow and repair itself. healthy diet provides your body. (oh KASometimes, not often. forgets to take hermedicine but she remembers most of the Occupational T
30 herapist (ah kyoo PAY shun ul ed learn b
herapist (ah kyoo PAY shun ul ed learn better ways to dodressing, cooking, eating, or driving. Also known as an OT. occupational therapist her how to set up her kitchen and officespace to lessen the stress on her hands. Orthopedic Surgeon or tho PEE dik sur junor tho PEE dik sur junjoints. onyÃs orthopedic surgeon has donemany operations to replace damagedjoints. Osteonecrosis Death of a bone or part of a bone fromby many diseases and from steroid use.
31 Dr. Santos told her that she had osteone
Dr. Santos told her that she had osteonecrosis steroids for many years. Osteoporosis Thin and weak bones which break easily. Osteoporosis steroids. ditis Ikar DY tis)is inflamed. SusanÃs chest and neck hurt when shewas lying down. Drshe had pericarditis and that this canhappen to people with lupus. Ito NEE um)Lining of the abdomen or belly. Janet had stomach pains that were worse Permanent PUR ma nentPUR ma nentNever goes away. MaryÃs arthritis ca
32 used permanent damage. Only surgery can
used permanent damage. Only surgery can help. pur SIS tentpur SIS tentLasts for a long time. Linda had a cough for twomonths and went to the doctor to find Pharmacist (FAR ma sist)trained person who prepares medicine.doctor ordered. pharmacist prescription. Sensitive to sunlight. These reactions can Dan always wears sunscreen when he walks outside because the medicine Physical Therapist known as a PT. A PT helps patientsstrength. physical therapist how
33 to change her exercise program (PLATE l
to change her exercise program (PLATE let) numbers are low. He gets PLUR I seePLUR I seeInflammation of the covering of the lungs.This can cause pain in the chest. deep breath. Dr. Santos told her that she had from her lupus. escription Written directions from your doctor to thepharmacist about your medicine. Also Susan can only get prednisone with a prescription from her doctor. Prevent (pre VENT)To keep from happening. Good health habits can help even
34 t heart disease or even cancer. ogressio
t heart disease or even cancer. ogression To move forward for better or for worse. New medicines can slow down the ogression of lupus. doctor who treats people for emotionalproblems or mental illness. helped Linda see thatit made sense for her to be upset.LindaÃs visits to the better. We donÃt have any ÃQÃ words, but you may.Write your ÃQÃ words here: _________________________________________________________________________________________________
35 _______________________________________
_______________________________________ problems. bone problems. RaynaudÃs Syndrome (ray NODES SIN drome)medical problem that causes the bloodvessels in the fingers and toes to narrowand let less blood through when they are cold. The fingers and toes become pale Janet always wears gloves when shegoes out in the cold because she has RaynaudÃs Syndrome (ree AK shun)response. An action that happens Dan had a rash and Dr. Lin said it was a eaction to his new
36 medicine. Usual, normal. Linda walks t
medicine. Usual, normal. Linda walks three times a week on a regular (ree LEEF) shower gives Gene elief his morning stiffness. (ree MI shun) LindaÃs lupus has been in emission six months. (roo ma TAL oh jist)and treating problems of the immune MaryÃs family doctor was not sure of the rheumatologist. SKEH jyoolSKEH jyool LindaÃs nurse, Ms. Green, helped her so she would knowwhen to take her pills. Linda used her kitchen calendar to her appointments
37 . e can black out and have uncontrolled
. e can black out and have uncontrolled Dan canÃt drive because he sometimeshas seizures Doctor Lin told him thathis caused by his lupus. SEN si tivSEN si tivEasily hurt or damaged. SusanÃs skin is very ong sunscreen. Severe Very serious or very bad. Janet stayed out of work because of severe Side effect reaction caused by a medicine. Susan told her friends that she gainedweight as a side effect of her steroids. medical problem that can be seen ornoti
38 ced by a doctor. butterfly rash is often
ced by a doctor. butterfly rash is often a of lupus. SjogrenÃs Syndrome (SHOW grins SIN drome)medical problem that causes the eyes three times a day because he has SjogrenÃs Syndrome.Soreness SORE nessSORE nessHurt, pain or ache. Linda has eness her wrists fromgardening. (SPAZ um) Robert had a muscle in his backafter painting his sonÃs room. ANo change. Stays the same. Santos told Linda that her lupus is since her symptoms have not gotten worse and s
39 he is feeling well. (STA min a)feeling t
he is feeling well. (STA min a)feeling tired or exhausted. Gene does not have enough work full-time. Steroid Medicines used to decrease inflammation. Corticosteriods are the steroids used to treat lupus. Hydrocortisone and prednisone are examples of steroids. Dr. Lin increases DanÃs steroid when his lupus is very active. Stress (stress) Linda notices that there is a lot of stress at work just before the holidays. Thiscould cause her lupus to flare up.
40 To complete or add to. Gene takes vitam
To complete or add to. Gene takes vitamins to diet. Suppress To hold back. Santos gave Linda steroids becausethey ess the immune system. gery SUR ger eeSUR ger eeAn operation. Tony walked better after his knee gery sus SEP tuh bulsus SEP tuh bulMoropen to. SusanÃs medicine helps her lupus. But, the medicine also makes her more to infection. An increase in size because of fluid. The bodyÃs response to injury or illness. Sonia put ice on her knee to re
41 duce the SIMP tumSIMP tumto an illness o
duce the SIMP tumSIMP tumto an illness or disease. Tony felt stiff every morning. This was of arthritis. Syndrome (SIN drome)together. Janet has RaynaudÃs Syndrome sis TE miksis TE mikIn all parts of the body Lupus is a disease because itinvolves the joints, skin, kidneys, lungs Systemic Lupus Erythematosus for more information. aper smaller. Janet was sure to steroids over two weeks. She knew thatit was dangerous to just stop taking hersteroids. Tempo
42 rary TEM pur ar eeTEM pur ar eeDoes not
rary TEM pur ar eeTEM pur ar eeDoes not last. Only for a short period oftime. afternoon. He knew this was only THEHR a peeTHEHR a peeAction to help a disease, illness, or injury. Mary walks every day as her arthritis. Treat (treet) Dr. Santos treats Linda for her lupus. Treatment The action or medicine used to take care eatment medicine and exercise. An open sore that can be inside or outside Linda has to take medicine to help herstomach Vague Unclear.
43 Not for sure SoniaÃs symptoms wer We d
Not for sure SoniaÃs symptoms wer We donÃt have any words for the following letters, but you may. Write other words here: ____________________________________________________________________ ________________________________________________________________________________________________________________________________________ ____________________________________________________________________ _____________________________________________________________
44 _______ Abbreviations Food and Drug Admi
_______ Abbreviations Food and Drug Administration. The is a government agency that means into the vein. is a unit of weight. It is used as anamount of medicine. Rheumatoid Arthritis (ROO ma toyd ar THRtis) Systemic Lupus Erythematosus. Skin Protection Factor is represented as a number. This num-ber tells you the strength of a sunscreenoduct. For example, an SPF of 30 offersgood protection. Ultraviolet rays A and ultraviolet rays B. A rays arsunlight.
45 You may come across other abbreviations
You may come across other abbreviations for longwords. Write other abbreviations here on this page: _________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________
46 ________________________________________
___________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________ Common Tests abnormal antibodies. Antiphospholipid Antibody More blood c
47 lots form when this measure Bone Density
lots form when this measure Bone Density Test how strong your bones are. Complement Proteins Proteins in the blood that fight infections.This test measures levels of these proteins Electrocardiogram. An EKG is an electric ocyte (ir RITH ro cite) Sedimentation group of tests that check how your liver is The percent of blood that is made up ofred blood cells. picture of the bones and other parts You may have to take other tests from time to time.Write other t
48 ests here on this page. ________________
ests here on this page. _____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________
49 ________________________________________
_____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________
50 ________________________________________
______________________________________________________ Places to Go for Care and Testing Cardiology The medical department that treats heartproblems. matology The medical department that treats skinproblems. Nephrology The medical department that treats kidney ology nur AL oh geenur AL oh geeThe medical department that treats prob-lems of the brain and nervous system. noo TRI shunnoo TRI shunThe medical department that focuses on Occupational Therapy Part
51 of the rehabilitation department. Thiskn
of the rehabilitation department. Thisknown as OT. and joint problems à usually with surgery. Physical Therapy Part of the rehabilitation department. Thistype of therapy helps patients learn waysto decrease their pain and to increase andkeep their motion and strength. Alsoknown as PT. (po DY a tree)The medical department that treats problems of the feet. (sy KY a tree)The medical department that treats peoplewith mental or emotional problems. problems. pro
52 blems. The medical department that treat
blems. The medical department that treats prob- Words to Ask About WordMeaning in Plain English _____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________
53 ________________________________________
_____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________
54 ________________________________________
__________________________________________________________ Places To Call For More Information YOUR LOCAL NUMBERS _______________________________________________________________________________________________________________________________________________________________________________________________________________ NATIONAL RESOURCES Lupus Foundation of America Mailing Address:2000 L St. NW, Suite 710Telephone Number:1-202-349-1155 Lupus Now Internet A
55 ddress:www.lupus.org National Arthritis
ddress:www.lupus.org National Arthritis Foundation Mailing Address:P.O. Box 7669 Today net Address:www.arthritis.org NIAMSNIAMSmation Mailing Address:NIHNIHTelephone Number:1-877-226-4267 (free call) Internet Address: www.niams.nih.gov Alliance for Lupus Research Mailing Address:28 West 44th StreetNew York, NY 10036Telephone Number:1-800-867-1743 (free call)Internet Address:www.lupusresearch.org Lupus Clinical TLCTCLCTC Mailing Address:221 East 48th StreetG
56 round FloorNew York, NY 10017Telephone N
round FloorNew York, NY 10017Telephone Number:1-212-593-7227 Lupus Research Institute Mailing Address:149 Madison AvenueNew York, NY 10016Internet Address:www.lupusresearchinstitute.org Rheuminations, Inc. Mailing Address:221 East 48th StreetGround FloorNew York, NY 10017Telephone Number:1-212-593-5180ess:www.dxlupus.com “Use the smallest word that does the job.” —E.B. White This booklet is available for downloading at www.hsph.harvard