Lupus erythematosus and Lupus Netherlands
This page summarizes the website of Lupus Netherlands in English. Topics covered are:
Please do not hesitate to contact us for more information.
Lupus Netherlands
Lupus Netherlands is a Dutch patient organization which promotes the interests of people having lupus erythematosus and related illnesses. Our slogan is: “for patients, by patients”. Our goal is to support our members by:
- Collecting information concerning lupus erythematosus;
- Spreading information concerning lupus erythematosus;
- Promoting the interests of lupus patients;
- Stimulating meetings with lupus patients.
The contact meetings are established by organizing:
- Contact meetings throughout the country;
- Informative meetings with readings from a specialist;
- Giving information and support to lupus patients by using the telephone done by LN-supervisors;
- Promoting contact between young lupus patients and also between partners, family and friends of lupus patients;
- Offering the possibility of on line contact meetings.
As mentioned before Lupus Netherlands organizes contact meetings throughout the Netherlands. A contact meeting is being lead by one or two LN-supervisors and is meant for lupus patients to come in contact with one another and to exchange knowledge and experiences. Many visitors find it comforting to find recognition at these contact meetings.
Contact meetings take place in Amsterdam, Rotterdam and Zoetermeer. An up to date schedule with dates and time are mentioned on this website.
Lupus Netherlands publishes quarterly the Lupus Magazine with information about activities, interviews, news about medical research, advice and other interesting information concerning lupus erythematosus. Lupus Netherlands has many information about lupus erythematosus. An extended selection of specific subject related brochures are part of this. These brochures can be ordered online.
Lupus Netherlands also organizes a couple of information meetings annually. For these meetings specialists are invited to give a reading about the subject where they are specialized in.
Finally Lupus Netherlands finds it very important that also “none patients” take notice of the existence and impact of this illness. Therefore Lupus Netherlands takes part in several activities and large events and tries in this way to reach this aim.
Lupus patients, patients with related illnesses like Mixed Connective Tissue Disease or the Sjögren's Syndrome and parents of lupus patients under the age of 16 years old can become a member of our organization. Partners and persons with interest can become a contributor.
Lupus erythematosus
Lupus belongs to rheumatic diseases and is often shortened in LE or SLE. It is an auto immune illness which means an illness where the immune system is disordered. Our immune system protects us against foreign intruders like bacteria and viruses. Because of an immunologic disorder it appears that the body cannot distinguish its own tissue from foreign intruders and therefore the immune system will attack instead of protecting our body. Lupus appears mostly in women and reveals usually at the age of 10 to 30 years old.
Lupus has several appearances:
- systemic lupus erythematosus (SLE): all organs can be involved;
- lupus erythematosus (LE): only the skin is involved.
- drug induced lupus erythematosus (DILE): by medication caused; the complaints disappear when medication is ceased.
In this section you will find more information about the history of the illness, the complaints and symptoms, the diagnosis and the ACR criteria, the cause and frequency, the treatment and course and lifestyle and child bearing with lupus.
History
Lupus means wolf in Latin and erythematosus means redness. The name was first given to the disease because it was thought that the skin damage resembled the bite of a wolf. Lupus has been known to physicians since 1828 when it was first described by the French dermatologist Biett. Early studies were simply descriptions of the disease, with emphasis on the skin changes. Forty five years later a dermatologist named Kaposi noted that some patients with lupus skin lesions showed signs that the disease affected internal organs. In the 1890’s Osler a famed US physician called Sir William observed that systemic lupus could affect internal organs without the occurrence of skin changes. In 1948 Dr. Malcolm Hargraves working at the Mayo Clinic described the lupus cell, which is a particular cell found in the blood of patients with systemic lupus. His discovery enabled physicians to identify many more cases of lupus by using a simple blood test. As a result, the number of systemic lupus cases that have been diagnosed during the succeeding years has steadily risen. Since 1954 various unusual proteins (or antibodies) that act against the patients’s own tissues have been found to be associated with systemic lupus. Detection of these abnormal proteins has been used to develop more sensitive tests for systemic lupus (i.e. antinuclear antibody (ANA) tests).
Complaints and symptoms
Lupus is an illness with many faces. An early diagnosis and an effective treatment makes it possible to have a normal life expectancy. Because almost every organ can be involved with this illness it can appear in different forms and with different intensities at different times in the same person. Symptoms may include the following in any combination:
- Generalized discomfort (malaise);
- Fever (Low grade, sometimes high);
- Joint pain, swelling and stiffness;
- Skin rashes (including the well known facial butterfly rash);
- Disorders in the complete blood count;
- Kidney disorders;
- Disorders of the nervous system (i.e. cognitive impairment and seizures);
- Heart and lung disorders (pericarditis and pleuritis);
- Sensitivity to ultraviolet rays of the sun;
- Oral ulcers;
- Blood clots;
- Dry mouth and dry eyes (Sjögren’s syndrome);
- “Dead fingers” that turn from white to blue-purple color (Raynaud’s phenomenon);
- Loss of weight.
The above mentioned complaints are possible symptoms of lupus. Not everyone having lupus will experience all these symptoms. Also the seriousness of the symptoms can be different for each patient.
Diagnosis
The diagnosis of lupus will be based on the complaints and symptoms of the patient and identified involved infected organs and/or disorders in the complete blood count. Several tests will be taken to confirm or exclude lupus if a physician presumes that someone has lupus. Tests will differ from a bloodtest up to an electrocardiography.
ACR criteria
The American College of Rheumatology (ACR) established new diagnostic criteria for lupus in 1997. After excluding rheumatoid arthritis, scleroderma and polymyositis, a diagnosis of lupus can be made if four of the following 11 criteria are met:
- Butterfly rash on the cheeks;
- Cutaneous (discoid) lupus;
- Sensitivity to sunlight;
- Mouth or nose sores;
- Arthritis (i.e. swelling or inflammation of several joints);
- More than 0.5 grams of protein in the urine per day or cellular casts in a urinelysis;
- Seizures of psychosis;
- Pleuritis or pericarditis;
- Low white blood count, low platelet count or hemolytic anemia;
- Existence of specific antibodies (i.e. anti-dsDNA or anti-Sm, antiphospholipid antibodies (a false-positive syphilis test), anticardiolipin antibodies or lupus anticoagulant);
-
Positive ANA test.
Cause
The cause of lupus is unknown although it is believed that many factors may be involved including genetic predisposition, hormones, severe stress and infections. Female hormones are known to promote lupus while male hormones protect from lupus. In families of patients with lupus it is known that there is an increase in the number of relatives with lupus and rheumatoid arthritis compared with the normal population. Some scientists believe that lupus is caused by a virus. Many flu like symptoms occur with lupus. Also environmental factors like excessive sun exposure has influence on lupus. Some patients experience lupus for the first time after a sunny summer holiday. Finally lupus like symptoms can occur after an allergic reaction to certain medicine. This is called drug-induced lupus erythematosus (DILE). The symptoms disappear when the medicine is no longer taken.
Frequency
Roughly 1 out of 4000 people suffer from lupus in the Netherlands. Lupus occurs nine times more often in women compared to men. Although the illness can occur at any age it hardly appears above the age of 45. It is rare that lupus appears in women before there fertile period begins. To have lupus after the menopause is even more rare. Lupus hardly appears in children younger than five years old. It is found throughout the world that lupus affects all ethnic groups and religions.
Treatment
The treatment of lupus is not to cure the disease but to decrease the symptoms. Used medications to treat lupus are:
- Aspirin;
- Nonsteroidal anti inflammatory drugs (NSAIDs);
- Antimalarial drugs;
- Corticosteroids;
- Immune suppressives;
- Antibiotics;
- Antihypertensives;
- Anticoagulants;
- Anticonsulvant medications.
All the above mentioned medicine have negative and positive effects. These effects differ per person. The physician informs the patient which treatment will be used.
Course
The course of the illness is so unpredictable that no two cases are alike. The patient with lupus may have periods of severe illness followed with periods of no illness and without any symptoms. When lupus is in an active period one speaks of a flare or exacerbation.
Lifestyle
Next to a treatment with medicine it is important to have an healthy lifestyle. Some suggestions to do so are:
- Take enough periods of rest;
- Do not smoke and do not drink too much;
- Avoid fear and stress;
- Take medicine as prescribed;
- Avoid excessive exposure to sunlight;
- Avoid contact with infectious diseases;
- Eat healthy;
- Keep a diary of symptoms to inform your physician.
Diet
It is not known whether food causes lupus. In general it is best to follow a well balanced diet. There are circumstances when your physician will prescribe a diet. This can be the case when having a kidney failure or high blood pressure to reduce the amount of proteins or salt in your diet.
Sunlight
It is a familiar symptom that lupus patients are sensitive to sunlight. There is no doubt that sunlight or ultraviolet light is an activator of the illness. Many patients notice a rash, joint pain and other lupus like symptoms after being exposed to sunlight or ultraviolet light. Not all patients are sensitive to sunlight nevertheless it is wise to avoid excessive exposure to sunlight. It is sensible to use crèmes with a high doses of UV protection.
Pregnancy
Patients with lupus usually can have successful pregnancies. The chance that the child from a mother with lupus will also develop lupus is fairly low. The child of a women with lupus having certain antibodies is at slight risk for developing neonatal lupus or a congenital heart block. Some patients with antiphospholipid antibodies have been shown to have spontaneous recurrent fetal loss and also are at risk for developing blood clots. When the lupus is in remission it is advisable to wait some six months before trying to become pregnant. There is a chance that during or after the pregnancy lupus flares up because of hormonal changes. Because of this risk it is advisable to be under supervision of a physician. Your physician will test your blood pressure regularly and will perform urine checks in order to prevent kidney failure. Note that it is not possible to take all forms of medicine during pregnancy. Therefore it is very important to inform your physician about your child wish before becoming pregnant.
Lupus Netherlands has a specific brochure concerning pregnancy.
Contact
Address
Boeier 2
2991 KA BARENDRECHT
The Netherlands
Phone: +31(0)180 61 10 10
E-mail: info@lupusnederland.nl
Bank
Bank account: 385912 for the attention of Lupus Nederland in Barendrecht
IBAN: NL74 INGB 0000385912
BIC: INGBNL2A
Lupus Netherlands is registered with number 40412940 at the Chamber of Commerce in the Hague, The Netherlands.