| Product: |
Lupus |
| Date: |
14/01/02 (117 review reads) |
| Rating: |
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Advantages: Absolutely none!
Disadvantages: Too many to list here
This will probably be my final op on Dooyoo so it seemed a fitting last word (I'd better add - no the illness isn't my reason for going - sorry I panicked a few people - oops!!)....
+++WHAT IS LUPUS?+++
Lupus is a chronic auto-immune disease, characterised by exacerbation's (called flares) and remissions. The body for some reason goes into overdrive - it basically becomes allergic to itself, the auto-antibodies attack the body's own cells and tissues. It can be triggered by a virus (that's what we think caused mine), long term medication, hormonal changes, there are a number of other factors that are suspected to cause Lupus. You CANNOT catch Lupus it is not passed from person to person, although it is now believed that it may be genetic.
The name "lupus" comes from the Latin meaning wolf and refers to the red ulcerations on the face. Systemic Lupus Erythematosus (SLE) did not acquire its name until the middle of the 19th century. Although there is no cure, this does not mean it cannot be controlled. Sometimes, patients find in their forties and fifties that their symptoms settle and they can come off all therapy. Although people of any age can suffer from lupus, women outnumber men by nine to one. It is a disease of young women, the peak age being 15 to 40 years. Once a disease with high mortality, SLE is now considered a chronic disease. In 1954, survival after 4 years was 50%; today it is more than 97%.
+++WHAT ARE THE SYMPTOMS?+++
Numerous, no two sufferers are ever the same. It can present in a bewildering number of ways, even to the extent of mimicking (it is often referred to as the mimic disease) other diseases such as rheumatoid arthritis or multiple sclerosis.
Symptoms include a rash, mouth ulcers, night sweats, severe joint pains, general aches, sun sensitivity, depression, exhaustion, hair loss, weight loss, dry eyes or mouth, forgetfulness, confusion, he
adaches/migraines, chest pains, persistent flu like symptoms, there are other symptoms that may occur. One thing that may be due to lupus is constant miscarriage; the body doesn't recognise the foetus and attacks it causing miscarriage.
+++THERE ARE TWO TYPES OF LUPUS+++
Systemic lupus erythematosus - SLE - (this is the type I have) has three phases - flare up, stabilisation and remission - any one of which can last for months or years at a time. This is the more serious of the two since it attacks major organ systems. Lupus can be disabling and even fatal, yet some people live with the disease for a lifetime. Although systemic lupus may be mild, if it is not controlled it can result in damage (or failure)to vital organs such as the kidneys, brain, heart and lungs, and therefore may be life threatening. There is generally no outward sign of systemic lupus (as there is with discoid), in my case I look extremely well but may be fighting against extreme pain. There is no "quick fix" for the disease.
Discoid lupus erythematosus (DLE). While not as serious as systemic, can be irritating and painful to live with. It causes non-infectious, itchy red patches or lesions on the skin. Often these patches are disc-shaped, but lesions on the face frequently from the classic butterfly shape over the bridge of the nose and across the upper cheeks. Rashes most often occur on the face and neck, although they can also appear on arms, legs, the trunk and scalp, and even on the palms, fingertips and soles of feet. The lesions don't usually last long, but they can remain for weeks, months, even years. The longer a lesion lasts, the greater the chance of scarring or baldness. The cause and cure of discoid lupus are unknown, but exposure to the sun can cause flare -ups. The most common treatment is to avoid the sun and treat rashes with cortisone or antimalarial drugs. In a small number of cases (less than 10%), people with discoi
d lupus will develop systemic lupus. I have been told stories of people having such sever problems that they are unable to work, as others that they work with can't accept the way they look.
+++WHAT'S THE CAUSE?+++
The cause is not known. There is a definite genetic tendency but despite years of research, no virus or infectious cause can be identified. Neither is there evidence of an environmental cause. Whatever the trigger, the basic problem is in an alteration in the immune system. The normal immune system, which produces antibodies against foreign invaders, such as bacteria, goes into "overdrive" and produces too many antibodies. Also, research suggests that hereditary factors play a role. Interesting advances in genetics have dramatically improved the pace of research for discovering the genes that contribute to lupus susceptibility, severity and mortality.
The following is attributed to triggering Lupus:
at puberty
after childbirth
through sunlight
during the menopause
after viral infection
as a result of trauma
after a prolonged course of medication
+++WHAT TRIGGERS LUPUS?+++
During its course, there may be "flare-ups" when the disease is active and remissions when the disease is controlled. Perhaps the best-known triggering factor is sunlight. Infections, injury, surgery, overexertion and exhaustion, stress, hormonal changes, nervous tension and emotional upsets have all been identified as possible precipitating factors. Certain drugs, such as sulpha compounds, may produce lupus symptoms and cause flare-ups. In my case my Lupus is always much, much worse before a period when my hormones are active and when I am stressed.
*****MY STORY******
THE START OF MY LUPUS:
About 9 years ago I woke one morning feeling as if I had the worlds worst case of
flu. I was very fit, rarely ill, certainly never been in hospital and never complained when I had minor ailments so there was a clue in the fact I absolutely insisted upon going to the doctor. The doctor recommended rest and aspirin or something similar. I went home but still felt dreadful, as if I had flu but a hundred times worse, I felt like I had gone ten rounds with Frank Bruno and lost the lot!!
At the time I was married and the next morning I woke up and literally couldn't move I was lying in a pool of sweat and all my joints were swollen. My husband rang the doctor and when she examined me she sent for an ambulance (she thought it might be meningitis as I also had a rash). I spent the next week in hospital; eventually I felt better and went home. The doctors had no idea what I had and said it must have been a bad virus.
For the next few years I never really felt very well, it was hard to say why and sometimes I couldn't really put my finger on what exactly it was, I certainly felt depressed which was weird, I was usually very upbeat. I was also constantly tired, and when I say tired I don't mean like after a late night, I was exhausted and could sleep and sleep as many hours as I was allowed. I was annoyed with myself as I thought I was being lazy. I also began to get night sweats, which are horrible! I then developed aches which can only be described as similar to "growing pains", you can't seem to sit comfortably at all. Finally I developed severe pains in my hands, to the extent I couldn't hold anything that weighed more than a few ounces, as it was too painful.
+++THE DIAGNOSIS+++
During this whole period I had been visiting the doctor on a regular basis, it was annoying, as I couldn't seem to convince them that something was wrong. The usual diagnosis in the case of Lupus female sufferers is that they are having hormone troubles, change of life etc, or that they are stressed
. I was convinced it was neither but no one could tell me what was wrong, or indeed believe me that I had a serious problem. Finally when I had the very severe pains in my hands which then moved into my knee joints too the doctor referred me to an arthritis clinic. It was at this stage that I was lucky enough to be seen by a doctor that was also a lupus specialist and he recognised the symptoms immediately. One simple blood test and I had the reason for all the problems.
+++TREATMENT+++
Lupus is first treated by anti-malarial drugs, which relieve most people's symptoms (strange but true). Unfortunately I was allergic to them; the next stage is steroids. I decided that the amount of pain I suffered was better than taking the steroids and having possible side effects so I rejected them. The only thing I can do in lieu of medication is the usual good living practices which are; healthy eating, exercise (which can almost totally remove the aches and pains), and being good to myself - as the doctor said "snooze when you need to and so what if the carpet needs hoovering don't worry about it!!" Stress is a real trigger for Lupus, unfortunately I have a high pressure job and its often hard not to allow myself to become stressed, as a consequence the Lupus flares up .I also take glucosamine sulphate which is good for joints and vitamin E also very helpful.
+++FACTS+++
Lupus is more common than leukaemia and multiple sclerosis with about 40,000+ sufferers in the UK alone.
It is a very individual illness with patients suffering varying degrees and different symptoms, as I said before it's often called the mimic illness as doctors mistake it for something else, the sufferers often look perfectly well and healthy (in my case people are amazed when I tell them).
It takes an average of 3-4 years to get a diagnosis, doctors mis-diagnose or think patients are suffering from depressi
on, hormonal change, a virus or are exaggerating the symptoms. The problem with the length of time that passes is that permanent damage to vital organs may now have occurred.
90% of sufferers are women and 80% of those afflicted with Systemic lupus develop it between the ages of 15 and 45 (in the prime of life). The current figure for estimated sufferers in now 1 in 750 females.
Hormonal factors may explain why lupus occurs more frequently in females than in males. The increase of disease symptoms before menstrual periods and/or during pregnancy support the belief that hormones, particularly oestrogen, may somewhat regulate the way the disease progresses. However, the exact reason for the greater prevalence of lupus in women, and the cyclic increase in symptoms, is unknown.
It can suddenly affect anyone at all at any time; there are a number of cases of children with lupus particularly girls at puberty.
The symptoms of the disease are the same in men and women. People of African, American Indian, and Asian origin are thought to develop the disease more frequently than Caucasian women. The reasons for this ethnic selection are not clear.
Frustratingly lupus sufferers often look really well, but are feeling rotten!
Currently Lupus is incurable.
+++USEFUL INFORMATION+++
There are a number of support groups around for Lupus sufferers, they are extremely useful as often sufferers know more than GP's (Lupus sufferers usually have regular appointments with specialists rather than GP's to check that the Lupus isn't getting any worse) and can swap advice with other sufferers. You suddenly realise you're not alone nor are you going insane, which prior to diagnosis you would believe! The groups are also useful as there aren't many books available and although there are a number of sites on the web a lot are in the USA or are very complicated using medical terminology.
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br>The best contact is Lupus UK who have videos, lists of books etc and can give you local contact numbers, you can join for a small fee £8 as I recall, and receive a regular magazine and information.
Lupus UK: St. James House, Eastern Road, Romford, Essex. Tel: 01708 731251.
***I begged Dooyoo for this category, (to the point of being a pest!!) as I believe things happen for a reason and have decided that my mission is to tell others about Lupus, mainly so that if you have a number of the symptoms I stated above, you won't go through the years of trauma that most sufferers do and insist upon a simple test to rule out Lupus. If anyone reads this and has any questions please e-mail me; I'd be delighted to answer them. Oh and if there are any nurses/doctors out there I have copies of a booklet especially designed for you, I'd be pleased to post you a copy or you can get it from Lupus UK (address above).
Angie x
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