Although Lupus is becoming more widely discussed, most people do not really have a true understanding of what it actually is. It is a chronic, autoimmune disease where a person’s immune system does not work as it should, it produces antibodies which work against their healthy cells and tissues; basically, the immune system has gone a bit wonky and is attacking the healthy tissue in a person’s body. A disease being chronic means that there is no cure for it, it is long lasting and will require regular ongoing, medical treatment going forward. It is estimated that there are 5 million people world-wide that suffer from Lupus. 9 in 10 cases are found in females. Lupus can, unfortunately, can be fatal and it is suggested that 15% of Lupus patients will die due to complications from the illness.
Types of Lupus
There are four different types of Lupus:
1. Systemic Lupus Erythematosus (S.L.E.):
This is the most common type of Lupus. It can affect the full body, from the skin, to the organs, to the joints
2. Discoid Lupus Erythematosus:
This only affects the skin. The areas of skin exposed to sunlight can develop sores, rashes and inflammation. Scarring can occur on the face, ears and scalp
3. Drug-Induced Lupus:
This is caused by certain medications. The symptoms experienced are similar to those of S.L.E. Once the specific drug is stopped, the symptoms normally stop as well, although symptoms may recur in the future.
4. Neonatal Lupus:
This is a very rare form of Lupus. The foetus is affected by the mothers antibodies. The baby is often born with some form of rash, liver issues and a low blood cell count. The good news is that the symptoms normally stop within 6 months and there are usually no long term issues going forward
Causes of Lupus
Despite lots of research being carried out on Lupus and it being in existence since 400BC, no one understands exactly what the cause of Lupus is. It has been suggested that there may be certain things that trigger it, these include:
· Genetics
· Environment
· Hormones
· Medications
· Infections
Symptoms
When it comes to Lupus, due to its complexity, there is a mile long list of symptoms and these are different for everyone. Lupus symptoms can change over time. To arrive at a Lupus diagnosis, you will normally need to have at least four conditions from a list of eleven possible conditions:
· Face Rash
This is the most common type of rash and is known as a Malar rash or a butterfly rash. It is called a butterfly rash due to its shape; it crosses over the cheeks and the nose. Rashes are often irritated by sunlight.
· Discoid Rash
This is where there are raised red patches over areas of your skin.
· Photosensitivity
An extreme sensitivity to sun light or artificial lights. Being exposed to this type of light can cause a rash or skin irritation.
· Mouth and nose ulcers
Can be extremely painful and uncomfortable.
· Arthritis
Extremely common in Lupus patients. Must be in two or more joints. Normally involves swelling, stiffness and pain.
· Serositis
An inflammation of a serous membrane covering internal organs.
· Kidney Issues
Often identified by too much protein in your urine.
· Neurological Disorders
Can cause seizures or other nerve problems.
· Blood issues
Often results in a low blood cell count.
· Immunological disorder
This where certain antibodies are found in your blood.
· Anti-Nuclear Antibody Test (ANA Test)
This is where a positive test would suggest. that you have too many antinuclear antibodies
Other related problems
Due to us Lupies liking to be greedy, there are often overlapping autoimmune disease and issues that we also struggle with. This is not a definitive list, but can include:
· Fatigue
This is one of the most common, yet most disruptive and frustrating symptoms, aside from the pain and inflammation, due to it robbing us of our energy at a ridiculous rate. It is probably the thing you’ll hear us moan about the most. This is something that is difficult to explain to someone who has never experienced this before and I always get quite defensive about it because I don’t want people to think I’m just lazy. It can appear that we are fine and well one day and struggling the next and this is exactly the case. When I talk about fatigue, I’m not talking about a tiredness that is solved by a nap or sleeping for a good 12 hours a night…..I am talking about an overwhelming, debilitating fatigue, that makes having a conversation or even holding a glass, nearly impossible…..at times we are literally walking around like zombies.
· Hair loss
Another lovely symptom of Lupus is hair loss. This can be a few strands or clumps at a time. Once the hair is lost, you may be lucky enough to have it grow back or you may be left indefinitely with random bald patches. Bizarrely the hair that you do have can hurt like hell at times.
· Sjogren’s Syndrome
This syndrome leads to dry eyes, which can very uncomfortable and itchy. This is caused by the bodies inability to secrete tears. This normally helped by regularly doses of artificial tear drops.
· Raynaud’s
The fingers and toes are most commonly affected. Due to poor circulation, they can become numb and cold. This can be affected by drops in temperature and stressful situations.
· Cognitive Disfunction aka Brain Fog
This can make it difficult learning new things. Your brain can feel like it has actually stopped working. It can lead to confusion, muddled words, poor memory and trouble concentrating.
· Hypermobility
This is the ability to move your joints out with their normal range of motion; like being able to put your leg behind your head.
· Willis-Ekbom Disease
This is an issue with the nervous system that causes a really unpleasant sensation in the legs, where you are left with an irresistible urge to continually move your legs.
· Myositis
This involves inflammation and degeneration of muscle tissue, which will develop into weak, painful and aching muscles. It can lead to problems with walking and standing.
· Mental Health Concerns
Mental health issues are a by-product of having Lupus. Common issues include depression and anxiety. There is a lot that you have to deal with on an ongoing basis and it is only natural that mental health issues may make an appearance. It is important to take control of these as soon as you notice this happening.
Diagnosis
It is important to catch Lupus as early as possible before irreversible damage is done. This is not as easy as it sounds, diagnosis is not a quick process, due to symptoms overlapping with a lot of other conditions; such as Multiple Sclerosis, Fibromyalgia and Rheumatoid Arthritis. On average it can take between 6 and 8 years for Lupus to be diagnosed.
There is no single test that determines if someone has Lupus. Diagnosis is based on a number of signs and symptoms being met, along with blood tests being carried out. Now, I don’t just mean a couple of vials of blood, you will feel like Dracula has been feasting on you at the end of it. Blood tests are done to determine if there are high levels of antinuclear antibodies (ANA) present within a patient’s blood. Depending upon which parts of your body are affected, you may also be sent for other tests, such as x-rays, scans and ultrasounds. A biopsy may also be required.
Doctors’ visits will become a regular part of your life. A Rheumatologist is normally the doctor that will work out a treatment plan for you and monitor your symptoms. After diagnosis you are monitored closely and will have regular tests going forward to see how the Lupus is progressing and if the current treatment plans are still working. Normally blood tests are carried out to check your anti-body and inflammations levels to make sure your medication is working. A urine analysis is also completed, due to kidneys issues being a common part of Lupus and it is important to identify issues quickly before damage occurs.
Hearing those word ‘you have Lupus’ can turn your life upside down and although it can be a shock to be informed that you have this life altering, never ending disease but there may also be a sense relief at finally being believed and that there is a reason for the way that you have been feeling. An overwhelming range of emotion may be experienced after diagnosis, including; sadness, anxiety, fear, frustration, hopelessness and guilt.
Treatments
There is no cure for Lupus. Treatments are only used to help ease a person’s symptoms. Treatments vary from person to person and will range from mild to aggressive, depending upon the severity of symptoms. Multiple medications are often used at one time.
There are many different treatments available but general doctor prescribed treatments include:
· Anti-inflammatory medications – these help with inflammation throughout the body, fever and swelling
· Anti-malaria medications – these help with fatigue, skin rashes and joint problems
· Steroids – these help with kidney issues and rashes
· Immunosuppressants – used to control the overactive immune responses (which can in turn make you more susceptible to infection)
Medications come with their own issues; will they work, how long will they work for and just like with any medication will there be side effects. Any possible side effects will be checked at your regular meetings with your rheumatologists.
Flares
When symptoms are inactive or relatively under control, this is known medically as being in remission. Personally, this is not a term that I like and instead like to think of it as a time when I’m kicking Lupus’ ass, rather than the other way about. When symptoms are active, this is known as a flare and is when Lupus is kicking my ass. When a flare occurs, we are normally left feeling drained and exhausted, both mentally and physically. When a flare does happen, the first course of action is normally extra pain killers and steroids. You will then be monitored closely to track your symptoms and decide what the next steps will be. Flares are unpredictable and can last from a few days to a few months or longer. They are often brought on by specific triggers. Personally, there is no rhyme or reason to my triggers; what triggers a flare this time, won’t necessarily trigger a flare next time. Triggers can include:
· Stress (this is a big one for me)
· Being out in the sun
· Infections
· Medications
· Lack of sleep (which is funny because insomnia is a side effect of a lot of the medications that we need to take)
· Bad diet
If we can control these, then there is less chance of a flare occurring but as you can imagine it is not always easy. Even though a person may follow their treatment plan fully, they may still experience a flare. This is why it is so important to manage everything so closely in your life and make sure there is plenty of rest time each day. It is important to listen to your body and not fight what it tells you. You might think this sounds easy but it’s not. Why should I have to rest today, just because I went to the shops yesterday…..this sense of unreliability is frustrating and something that I still struggle with. You need to pace yourself and plan your activities carefully and if you can’t do anything, then you can’t do anything. Having limitations does not mean that we cannot live our life, we just need to live it a little bit slower at times or there could be serious consequences.
Conclusion
It is a challenge living with Lupus and it does total alter your life. It can be a daily struggle. A good day, for someone with Lupus, doesn’t start with no pain, it usually starts with pain levels of a 3 or 4 and we aren’t even out of bed at this point. Lupus is described as a chronic illness but it is so much more than that, what it is, is a living nightmare but it doesn’t need to be a tragedy and that is why an upbeat view on life is so important. It makes a huge difference and, although at times it is easy to forget this, I believe attitude is everything and positivity is key. It would be way too easy to get caught up in the ‘I have Lupus’ victim mode but at the end of the day we still have a life that we need to live the best that we can. Lupus isn’t going away, it is going to be with you for the rest of your life, so you have a choice to make; let it consume you or take control and fight hard to live a good life. It is important to remember you have Lupus…..it does NOT have you!
Those of us who suffer from Lupus, don’t want people to feel sorry for us, what we want is for people to understand what we are going through and that we really are trying the best we can to live some semblance of life.
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