Do your own family medical history - PDF document

1 Do your own family medical history. Take
Do your own family medical history. Take an inventory ofyour family픀s health problems,expanding your researcheyond your immediate family to cousins,aunts,uncles,and other relatives.Sincecurrent research points to a genetic component in most autoimmune diseases,youshould know the health histories ofyour first-degree relatives,including grandparentsand cousins,ifpossible.In a family with a history ofautoimmune disease,anndividual has a higher risk ofdeveloping autoimmune diseases in general,ratherhan a specific autoimmune disease.Once you know your family history,you cancommunicate it effectively to your doctor who can then assess the possibilities with adegree ofaccuracy and order appropriate tests. Keep a symptoms list. People with autoimmune diseases often suffer from a number ofsymptoms that,on the surface,seem unrelated.In addition,they may have suffered from other seem-ingly unrelated symptoms throughout their lives.It픀s important,therefore,to make alist ofevery major symptom you픀ve experienced so that you can present it clearly to Know indvance what questions are truly important to you.In this way,you will not spend a lotoftime discussing things that confuse the issue ofyour current needs. Seek referrals to good physicians. alk to your family and friends.Ifyou픀re having trouble getting a proper diagnosis,ether someone you know and trust can recommend an internist in your Inquire about the experience of both the hospital and the All patients want to receive the highest quality treatment,but it is difficult toevaluate physicians and hospitals to whom they entrust their care.It픀s a good idea toask the physician whether he or she treats patients with the specific disease that has Obtain a thorough clinical examination. ests vary for different autoimmune diseases,and a diagnosis is usually reachedthrough careful analysis oflaboratory test results combined with a patient examinationhistory.When facing test situations,a patient might ask:What is the purpose ofthis test? Are there any alternatives? Is this an outpatient or inpatient procedure? Cananticipate any pain,discomfort,or claustrophobia;and ifso,can I take medication tomake me more comfortable? How much does the procedure cost,and is it covered bylth insurance? Can I get a copy ofthe test results? What will they tell me aboutmy condition? (You will need a copy oflab test results to give to other doctors ifyouare going to seek a second opinion.) The patient needs to understand that,although Get a second, third, and fourth opinion, if necessary. Sort out your options for treatment at the beginning before symptoms worsen,butcheck first to see whether your insurance will pay for a consultation.Sinceutoimmunity has just begun to be recognized as the underlying cause ofsome 100nown autoimmune diseases and because symptoms can be vague and not visiblyapparent,many doctors don픀t think to test for autoimmune diseases initially.Ifadoctor doesn픀t take your symptoms seriously,dismisses them as stress-related (whenyou do not feel as though you are under any excess stress),or refers you to asychologist,find another doctor.You know you픀re not feeling well--don픀t beintimidated.When trying to get a correct diagnosis,it픀s important to be assertive. Partner with your physicians to manage your disease. Once your have settled on your treatment plan,keep in mind that your health is bestmanaged through a partnershipÑyou and your medical team.Ifmore than onemedical specialist is treating you,select one ofthose physicians to be your 툀main팀 What are the treatment options? What are the advantages and disadvantages ofeach? long will the treatment last? earn to deal early on with the long-term effects of autoimmune disease. mplicated process ofobtaining a diagnosis and developing an appropriatetreatment may mean that you will be subjected to a great deal ofuncertainty.Accept that patients with autoimmune disease and their families very likely will needewhat different lifestyle.Sharing your situation with others can have enormous benefit,including elicitingthe kind ofemotional support that is so necessary for people with undiagnosedautoimmune diseases.Some people are using the Internet as a way to communicatetheir symptoms with others.Doing so can help advance your own personal research, Getting a diagnosis can be a challenging journey. For people with autoimmune diseases,getting a proper diagnosis can be one ofthemost difficult challenges they face.AARDA conducted a survey ofautoimmunedisease patients and found that the majority ofthose eventually diagnosed with Tips for Getting a Proper Diagnosis of an Autoimmune Disease American Autoimmune Related Disease Association 22100 Gratiot Avenue, Eastpointe, MI 48021 www.aarda.org Understand that autoimmune diseases constitute a major According to the National Institutes ofHealtNIHNIHthere are illion Americans suffer from autoimmune diseases and the revalenceofthese diseases is rising. In comparison,cancer affects up to 9 million andheart disease up to 22 million.Collectively,autoimmune disease is one ofthetop 10 leading causes ofdeath in children and women under 65 and representssome $100 billion in annual direct health care costs.Yet,fewer than 6 percenticans in a recent AARDA/Roper poll

2 could identify anautoimmune disease. Ge
could identify anautoimmune disease. Get educated. There are more than 80 known autoimmune diseases and an additional 40are suspected to be autoimmune-related. mselves can affect almost any part ofthe body,including the kidneys,skin,heart,liver,lymph nodes,thyroid and the central nervous system.As ahey cut across various medical specialties,such as endocrinology,ology,dermatology,rheumatology,gastroenterology and hematology,among others.Autoimmune diseases include multiple sclerosis,myasthenialeroderma,polymyositis,vasculitis,lupus,Sjšgren픀s disease,iopathic thrombocytopenic purpITPITPtype 1 or juvenile diabetes,nd Graves픀disease. mmunity is the underlying cause ofthese diseases. rocessereby the immune system mistakenly recognizes the body픀s own proteinsas foreign invaders and begins producing antibodies that attack healthy cellsand tissues,causing a variety ofdiseases. rda.org for more detailed information and a complete disease list. Be aware that autoimmune diseases target women. ore likely than men to be affected;some estimates say that75 percent ofthose affected are women.These women are usually in theldbearing years.In the past several years,autoimmunity has begun to beed as a major women픀s health issue,with the Office ofResearch onWomen픀s Health at NIH recognizing it as such and the Society forvancement ofWomen픀s Health Research naming it as one of10 diseasesdisproportionately affect women. Know that autoimmune diseases run in families. esearch points to a component in autoimmune diseases. However,autoimmune diseases are not typical genetic diseases like,fornstance,sickle cell anemia,where there is a specific gene mutation.Withmmune diseases,multiple genes are involved that collectively increasevulnerability or susceptibility.Thus,what is inherited is not one specific geneut several genes that increase risk.As a result,autoimmune diseases tend toter팀in families - not as one particular disease,but as a general tendencyto the autoimmune process and,consequently,different autoimmuneiseases.For example,one family member may have autoimmune hepatitis;her,celiac disease;another,rheumatoid arthritis. Do your own family medical history. Given the family connection,knowing the health histories ofother familymembers is critical.For example,ifyour grandmother or father or sister oruncle has an autoimmune disease,you could be more susceptible to developingone yourself.Take an inventory ofyour family health problems,expandingyour research beyond your immediate family to include grandparents,aunts,uncles,cousins and other relatives.Once you know your family history,share itwith other family members and your doctor who can then assess thepossibilities with a degree ofaccuracy and order appropriate tests. Keep a ÒsymptomsÓ list. People with autoimmune diseases often suffer from a number ofsymptoms that,on the surface,seem unrelated.In addition,they may haverom other seemingly unrelated symptoms throughout their lives.Itportant,therefore,to make a list ofevery major symptom you픀veexperienced so that you can present it clearly to your doctor.List thein the order ofconcern to you. Realize that getting an autoimmune disease diagnosis isoften challenging. AARDA study ofautoimmune patients found that the average time forserious autoimmune disease is 4.6 years.During that period,he patient typically has seen 4.8 doctors (Kellie Martin픀s sister had seenen doctors before being diagnosed);and 46 percent ofthe patients weretold initially that they were too concerned about their health or that they werechronic complainers.One ofthe factors that makes getting a correct autoimmune diseasediagnosis so difficult is that symptoms can vary widely,notably from onedisease to another,but even within the same disease.Also,becauseautoimmune diseases affect multiple systems,their symptoms can often bemisleading.The medical community픀s lack ofknowledge ofautoimmune diseasecompounds the problem.Even though these diseases share a geneticbackground and tend to run in families,most health questionnaires atdoctors픀offices do not ask whether there is a family history ofautoimmunedisease. Hold the power to protect your familyÕs future healthand well-being in your hands. Congratulations! By working through these steps and doing yourhomework,you now have the knowledge to determine whether you or yourloved ones could be at risk for developing an autoimmune disease. you know your family AQ? The following article is an AARDA press release that was designed to spread autoimmune awareness,especially during May, which was ÒAutoimmune Diseases Awareness Month.Ó This information formed the basis for a PSA featuring Kellie Martin, AARDA픀s spokesperson, which has been picked up by TV stations across the country. Watch for it! American Autoimmune Related Disease Association 22100 Gratiot Avenue, Eastpointe, MI 48021 www.aarda.org The American Autoimmune Related Diseases Association (AARDA) wants to help you learn your family픀s AQ.AQ is a play on IQ and stands for Autoimmune Quotient. It픀s about knowing how likely you or a loved one is to develop an autoimmune disease,based on the prevalence ofthese diseases and your family history. AARDA offers the following advice to help you determine your familyÕs AQ.