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Author Topic: Who Gets Lupus?  (Read 8470 times)
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« on: May 29, 2006, 11:38:59 am »

ftp://Racial and ethnic minorities experience higher rates of a variety of health concerns than other populations. For example, the National Public Health Association reports that in the year 2000, nearly 8 percent of Caucasians were considered to be in fair or poor health compared to nearly 13 percent of Latinos, nearly 14 percent of African Americans, and more than 17 percent of Native Americans.

In addition to ethnicity (race, cultural values, beliefs, and practices), some potential reasons for racial health disparities include communication barriers, lack of access to care, lower income levels, and lack of insurance.

Facts About Gender and Racial Disparities in Lupus

Lupus targets women and minorities.
Lupus is estimated to affect 1 to 1.5 million Americans, 90 percent of whom are women.
African-American women are three times more likely to get lupus than Caucasian women and to suffer worse symptoms. According to the National Institutes of Health (NIH), as many as one in every 250 African-American women has lupus.
Latino, Asian, and Native American women have an increased incidence of lupus. In fact, lupus is twice as prevalent among Asian-American and Latino women as it is among Caucasian women.
The Centers for Disease Control and Prevention (CDC) reports that death rates from lupus are more than five times higher for women than for men and more than three times higher for African Americans than for Caucasians.
Between 1979 and 1998, death rates from lupus increased nearly 70 percent among African-American women between the ages of 45 and 64 years.
Ethnicity, the Major Determinant of Lupus Progression

The largest multi-ethnic, multi-regional, and multi-institutional study of lupus, called Lupus in Minorities: Nature Versus Nurture (LUMINA), has provided insight into the extent of disease, and the role of nature (genetics) or nurture (lifestyle) in lupus among Latino and African-American populations. The study tracked death, damage, disability, and disease activity.

LUMINA began in 1993, and was spearheaded by investigators from three institutions: Graciela S. Alarcon, MD, MPH, from the University of Alabama, John D. Reveille, MD of the University of Texas Health Science Center-Houston, Jeffrey R. Lisse, MD, of the University of Texas Medical Branch-Galveston, and more recently, Luis M. Vilá, MD of the University of Puerto Rico School of Medicine.

The researchers have published numerous papers reporting study findings on the relative contribution of genetic and socioeconomic factors on the course and outcome of lupus in Latinos, African Americans, and Caucasians.

LUMINA Findings

African-American and Latino lupus patients tend to develop lupus earlier in life, experience greater disease activity such as kidney problems, and have overall more severe disease than Caucasian patients.
Latino women had a poorer prognosis overall than Caucasian women, were more likely to have kidney involvement and damage, and showed a more rapid rate of kidney failure.
African-American patients had a higher frequency of neurological problems such as seizures, hemorrhage, and stroke while Latinos experienced a higher level of cardiac disease.
Genetic and ethnic factors appear to be more important than socioeconomic determinants in influencing disease activity and certain organ manifestations at disease onset and presentation. The results also suggest that there are probably other genetic factors affecting the presentation of the disease in the African-American and Latino communities.

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« Last Edit: December 10, 2006, 09:21:34 am by Kathy » Logged


I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
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« Reply #1 on: June 03, 2006, 04:14:03 pm »


Skin Care and Lupus

Skin problems are very common in people with lupus. Some skin rashes and sores (also called lesions or ulcers) are very specific to lupus, while others can occur in other diseases as well. A sensitivity to and too much exposure to the ultraviolet (UV) rays of sun and some types of artificial light are responsible for aggravating some rashes and lesions. Many types of skin conditions are common in lupus.

Butterfly rash: This rash over the nose and cheeks can range from a faint blush to a rash that is very severe, with scaling. It is very sensitive to light and appears to gets worse when skin is exposed to sun or certain types of artificial light. The rash may be permanent or may come and go.

Discoid lesions: These scarring, coin-shaped lesions are seen on areas of the skin that have been exposed to UV light. They may also occur on the scalp and produce a scarring, localized baldness that is permanent.

Subacute cutaneous lesions: These nonscarring, red, coin-shaped lesions are very sensitive to UV light. They can appear scaly and can mimic the lesions seen in psoriasis. They may occur only on the face or cover large areas of the body.

Mucous membrane lesions: Mouth ulcers are sometimes seen in lupus patients. Nose and vaginal ulcers may also occur. These lesions are usually painless.

Hair loss: In addition to losing hair because of discoid lesions, some lupus patients may develop a temporary, generalized hair loss followed by the growth of new hair. Hair loss may also be caused by infection or by use of corticosteroids or other lupus medications. A severe lupus flare could result in defective hair growth, causing the hair to be fragile and break easily.

Vasculitis: This is a condition in which the blood vessels become inflamed. Very small blood vessels can break and cause bleeding into the tissues, resulting in tiny, reddish-purple spots on the skin known as petechiae (pe-teke-ee-ah). Larger spots are called purpura and may look like a bruise. Vasculitis can also cause blood clots to form, skinulcers to develop, and small black areas to appear around fingers and toenails. These black areas are a sign of serious tissue damage. If they begin to develop, see your doctor immediately.

Raynaud’s phenomenon: This is a condition in which the blood vessels of the fingers and toes react in an extreme way to cold or stress. They suddenly get very narrow (vasoconstrict). This decreases the blood supply going through the vessel. As a result, the fingers and toes become cold and can become pale or bluish. Pain or tingling can occur when the hands and feet warm up and circulation returns to normal.

Drug-induced skin changes: Some drugs used to treat lupus, such as corticosteroids, immunosuppressives, and antineoplastics, can affect the skin. Your doctor or nurse will review these side effects with you if one of these drugs has been prescribed.

Caring For Yourself

Reduce your exposure to the sun and to some sources of artificial light (especially fluorescent and halogen bulbs). The skin of people with lupus is very sensitive to the UV light that comes from these sources.


Limit outdoor activity between the hours of 10 a.m. and 4 p.m. This may mean a big change in your lifestyle if you work or play outdoors a lot.


Wear a sunscreen on exposed areas of skin. It should have a sun protection factor (SPF) of 15 or higher. Be sure that the sunscreen protects against both UVB and UVA rays.


Wear sunscreen all year round and on cloudy days as well as on sunny days. Also wear it indoors if you spend a lot of time in a room with many windows (glass does not filter out UV rays).


Wear protective clothing, such as hats with wide brims and clothing made of tightly woven material. Thin, loosely woven material allows UV light to penetrate to the skin.


Be aware of fluorescent light and halogen lamps. They can be found in many places and include floor lamps, overhead lights, photo-copiers, and slide projectors. Sunscreen and protective clothing can help.


Tell your doctor immediately if any rash or sore appears or gets worse.


If your doctor prescribes a medication for your skin condition, be sure to take it as directed.


Try rinsing your mouth with salt water and eating soft foods if you have mouth ulcers. A number of other treatments and preparations are available to treat mouth ulcers as well as those in the nose and vagina.


Avoid preparations or medications you know will make your skin condition worse. These might include hair dyes, skin creams, certain drugs that can make you more sensitive to the sun (for example, tetracyclines or diuretics), and things you are allergic to.


It’s okay to wear makeup, but try hypoallergenic brands. A brand that also includes UV protection would be good to use.


If you have Raynaud’s phenomenon, dress warmly in cold weather. Pay particular attention to keeping your hands and feet warm. Keeping your home warm will also help prevent an attack. Avoid smoking, caffeine, and stress — all of these can contribute to Raynaud’s phenomenon.


If you have trouble maintaining a positive attitude about your appearance or your lupus, call your doctor or nurse to discuss your feelings and concerns. 
« Last Edit: December 10, 2006, 09:20:33 am by Kathy » Logged


I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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« Reply #2 on: June 03, 2006, 04:55:28 pm »

Serious Conditions Associated With Lupus

Although lupus can be well controlled in many people, serious medical conditions caused by or associated with the disease can still occur. It is important that you know about these conditions and how they may make you feel so that you can call your doctor right away. The sooner a problem is detected and evaluated, the sooner it can be treated to prevent or reduce damage to your body’s organs.

Kidney disease:
 Many people with lupus develop some form of mild kidney disease. Others, however, develop kidney disease serious enough to lead to kidney failure.
Warning signs include:
swelling around your ankles, hands, and eyes; increased fatigue or tiredness, especially if you have not altered your rest and activity patterns; and increased need to urinate at night.

Pericarditis:
Pericarditis is an inflammation of the thin sac that surrounds the heart.
Warning signs include:

chest pain, shortness of breath, and new or higher-than-usual fever.

Myocarditis:
Myocarditis is an inflammation of the heart muscle.
Warning signs include:
chest pain, shortness of breath, and new or higher-than-usual fever.

Atherosclerosis:
This is a condition in which fatty deposits build up on the inside of arteries. These deposits can reduce or block blood flow. A blockage or reduced blood flow through an artery that supplies the heart can cause a heart attack to occur.
Warning signs include:
burning, choking, squeezing, or pressing chest pain felt in the center of the chest that may radiate to the left shoulder and arm (anginal pain); it can last up to 5 minutes and will become much less intense or go away completely if you rest; crushing, prolonged chest pain that is not relieved by rest; shortness of breath; unrelieved indigestion; and a weak or faint feeling.

Pleuritis:
Pleuritis is an inflammation of the lining of the lung.
Warning signs include:
shortness of breath, and chest pain, especially when taking a deep breath.

Central Nervous System (CNS) disease:
CNS disease covers a variety of problems that may or may not be related to lupus. Problems can include seizures, memory loss, headache, confusion, hearing and visual changes, muscle weakness, depression, and emotional disturbances. Because many of these problems can be related to use of medications or indicate other conditions, it is often difficult to make a definite diagnosis of CNS disease.

Warning signs include:
severe or chronic headaches;
seizures;
periods of forgetfulness, restlessness, or confusion;
new or increased hearing and vision problems;
bizarre or erratic changes in behavior;
mood swings; and
signs of a stroke, including weakness or numbness in the arms, legs, face, or down one side of the body; a change in speech; confusion; or severe headaches.

Depression:
With depression, people may feel helpless, hopeless, or overwhelmed. They may find it difficult to get through the day. Depression can occur as a result of lupus or be caused by the drugs used to treat it, especially cortico-steroids.
Warning signs include:
depressed mood;
significant weight loss or gain;
trouble sleeping or sleeping too much;
extreme tiredness and lack of energy;
decreased concentration or an inability to make a decision;
feelings of being overwhelmed and unable to carry out simple tasks, such as personal hygiene, housework, or childcare;
feelings of hopelessness about various aspects of life;
unusual anger or irritability; and
recurrent thoughts of death and suicide.

Osteonecrosis:
This is a condition that usually affects the hip joint, but may occur in other joints such as the knees, ankles, or shoulders. Blood supply to the hip is reduced and, over time, leads to severe degenerative arthritis. Osteonecrosis is considered to be a side effect of corticosteroid therapy and not a manifestation of SLE itself.
Warning signs include:
sharp pain in the groin or buttocks that may radiate down the back of the leg, decreased exercise tolerance, stiffness of the hips, and increased pain and difficulty in walking after exercise.

Pancreatitis: In pancreatitis, the pancreas (an organ involved in digestion and in producing hormones that regulate blood sugar levels) becomes inflamed. It is a very serious problem that must be treated immediately.
Warning signs include:
sharp, intense pain at the level of the belly button that radiates around to the back; nausea and vomiting; and new or higher-than-usual fever.

Acute abdomen:
 This is a condition that describes the sudden onset of abdominal pain. A variety of serious problems can cause this condition. You should see your doctor immediately if you develop acute abdomen.
Warning signs include:
abdominal pain that may be severe and radiate throughout the abdominal area; nausea, vomiting, or loss of appetite; change in usual bowel movements; and vomiting blood or blood in the stool.

Vision problems:
Changes in vision can be a result of lupus or because of the corticosteroids and antimalarials used to treat lupus. Problems can include inflammation of the eye, glaucoma, cataracts, general changes in vision, and blocked tear ducts. On very rare occasions, blindness can result.
Warning signs include:
development of a rash over the eyelids; mucus discharge from the eye;
blurred vision; sensitivity to light; headaches; a sore, red eye; lack of tears, and eyes that hurt and are dry; and episodes of flashing lights and partial blindness.
« Last Edit: June 03, 2006, 04:57:35 pm by Kathy » Logged


I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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« Reply #3 on: June 03, 2006, 05:40:25 pm »

Living With Lupus
You have recently been diagnosed with a disease known as systemic lupus erythematosus (SLE). It has probably taken time to arrive at this diagnosis. Now that you know, you may feel relieved but also overwhelmed. You probably have a lot of questions about lupus.

You may have a mild or a more serious form, but no matter how severe your lupus is, you will need close medical supervision. You may also need to make lifestyle changes to keep your disease under control and feel as well as possible. At the beginning, you may feel some of these emotions:

anger or depression over the loss of your former good health, uncertainty about what to tell family, friends, or coworkers, guilt for having lupus and the burden it may cause your family, fear that you may lose your job if you can no longer work regularly, and fear that you may die.

These are all normal feelings, and you are not alone in having them. You should give yourself time to adjust to your illness. This may or may not be easy for you. Discuss your feelings and concerns with your doctor and nurse and with your family and friends. Sometimes, talking with other people who have lupus is helpful. If you are having a hard time adjusting to your diagnosis, consider seeking the help of a counselor.

Many physical and emotional issues confront people with lupus, both in the beginning and throughout the course of their disease. The most common issues include the following.

Fatigue:
Fatigue is a chronic problem that is usually accompanied by joint pain and stiffness. It can affect many aspects of your daily life.

Changes in personal appearance:
You may experience changes in your personal appearance. Discoid lupus (a form of lupus) may cause sores, blotches, or scarring on the face, arms, shoulders, neck, or back. The medications for lupus can also sometimes change your appearance. For example, corticosteroids can cause weight gain, excessive hair growth, or swelling. Some drugs may cause hair loss. These changes in the way you look can be emotionally challenging to deal with.

Changes in physical ability:
Many people with lupus feel isolated because their fatigue and need to rest keep them from maintaining normal work and social schedules. You may feel frustrated if you can’t participate in outdoor activities with family or friends because of sensitivity to the sun. There will be times when you may feel it is easier to stay home than to make plans and later cancel them because you are too tired or not feeling well.

Psychological effects of corticosteroids:

Corticosteroids are used to treat many of the symptoms of lupus that result from inflammation. Their use can cause anxiety, mood changes, forgetfulness, depression, personality changes, and other psychological problems. You need to know about the possible side effects of these drugs while you are taking them. It is also important that your family and friends understand the effects of these drugs so that they can be supportive if you should experience any side effects.

Depression:
You may feel sad or depressed at times in your struggle to control lupus or because of the medications you take. Good communication with your doctor and health care team, as well as with your family and friends, is important in helping you cope with these feelings.

Concern for the future:
Because the future and course of your disease are unknown, planning for your job, your family, and life in general can be difficult at times.

Family concerns:
Like you, your family can be overwhelmed about your diagnosis and may have a difficult time understanding and adapting to your disease. They may feel confused, helpless, and afraid. Because of your physical limitations, traditional roles and responsibilities within the family may need to change. It is important that everyone talk openly and honestly with each other. It is also important that your family learns about your disease so they can better understand your physical and emotional condition and the changes in your family that may result.

Caring For Yourself

Learn as much about lupus as possible.


Understand that you will experience a variety of emotions, particularly when you are first diagnosed and adjusting to the fact that you have lupus.


Adopt a positive attitude.


Evaluate your personal strengths and resources, such as family, friends, coworkers, and community ties.


Determine what your needs are, then make a plan to address them.


Don’t be afraid to set goals for yourself, but be flexible.


Learn how to manage the physical aspects of your disease and the effects they have on other areas of your life.


Learn to deal with stressful situations, because stress and anxiety can make your lupus symptoms worse.


Learn to talk with your health care team, family, friends, and coworkers about lupus and the effect it has on your life.


Don’t be afraid to seek help for yourself or your family.
Remember: Living well with lupus is possible. It is important that you take control of your illness and not allow it to take control of you. Adopting a positive attitude and striving to be happy can make a big difference in the quality of your life and that of your family and friends.
 
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« Last Edit: December 10, 2006, 09:19:47 am by Kathy » Logged


I look normal, as I have an "Invisible Illness". You can not catch it, you can not see it. It's called Lupus.My body is attacking itself on the inside.
www.LupusMCTD.com Represents:
1) We are patients helping researchers build a future for the lives of others...
2) Where HOPE is a WORK In Progress
3) Pay It Forward~Giving Back To The Future Lupus/MCTD Patients
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