Please subscribe to Lupus Comforts channel for more videos on Lupus.
What 11 Common Criteria or Measures are used to diagnose Lupus?
Please subscribe to Lupus Comforts channel for more videos on Lupus.
Please subscribe to Lupus Comforts channel for more videos on Lupus.
Symptoms of Lupus
Lupus is said to be a great imitator – the symptoms of lupus could often be mistaken to be symptoms of other illnesses like blood disorders, diabetes, heart disease, kidney, bone, or lung disease. Hence why it has become even more important to be aware of this invisible underlying autoimmune condition that you could be totally neglecting and only treating symptoms of other illnesses.
No two people have the exact signs or symptoms, but most lupus patients have these symptoms in common:
- Fatigue – it is very important to recognize that a lupus fatigue is very different from a healthy person feeling tired.
- Butterfly shaped rash – many but not all lupus patients have this red rash on their cheeks and over the bridge of the nose. Lupus patients can have this red rash on their face, neck, chest or on other parts of their body as well. An interesting fact, it is this butterfly rash, that you can actually see, is said to be “one of the most visible symptoms of lupus”, that’s why butterfly is used as a symbol for lupus, a symbol for hope for lupus patients and lupus is denoted with purple colour. While the symbol for lupus is a butterfly, the word lupus itself a Latin word for ‘wolf’ and it was used to describe the erosive facial lesions that were similar of a wolf’s bite which were later referred to as discoid lupus. I guess back then anyone who survived a wolf’s bite would have been a real warrior, hence why lupus suffers are often called lupus warriors. Fascinating and equally confusing combination of a wolf and a butterfly to represent lupus.
- Joint pain, stiffness, and swelling – these were the first indicator for me in 2007.
- Anaemia – which is low count of red blood cells. Lupus is common in women and so is anaemia.
- Abnormal blood clotting is another sign – I experience that all the time. I usually find unexplained dark patches on my legs, highs, hands and it often looks like a bruise, but I can never recall getting injured.
- Hair loss – I have is thin, brittle hair, and lots of hair fall. Lupus damages hair follicles that causes hair to fall out and it can also be a side effect of lupus medication. For some lupus patients, they can get lupus flare on their head which could lead to alopecia – that is the total loss of hair (at one stage I had also ended up losing all my hair and I will give you more information on that in my upcoming videos, so keep watching).
- Other symptoms include having fever, skin lesions, fingers and toes turning white or blue when exposed to cold (Raynaud’s disease), shortness of breath, chest pain, mouth ulcers, dry eyes, blurry vision, could experience confusion, memory loss, weight fluctuation, depression, sun or just in general light sensitivity and so on.
Just like the causes of lupus, the symptoms of lupus are also quite broad. I would say, you know yourself, you know your body, if you are experiencing something unusual in your body for a prolong period of time and there is no good explanation for it, then I suggest you be proactive and see your GP.
Coronavirus and Lupus
We are all in the midst of a global coronavirus pandemic and I am sure you must have heard that people with underlying health issues are at a greater risk. What does that actually mean for a person with an autoimmune condition such as lupus?
I have lupus which means that my immune system which is supposed to protect me from viruses and infections, is actually confused and is attacking my own healthy tissues and organs. My body is producing a lot of white blood cells which are hyperactive. To prevent my immune system from damaging my own healthy tissues, I have to take immunosuppressant medications to say make it less hyperactive.
I take Azathioprine or Imuran and Prednisone as immunosuppressants in combination with an antimalarial medication called Hydroxychloroquine (mostly known as Plaquenil) which is widely used to treat lupus.
Do I boost my immune system against viruses and infections and let my hyperactive immune system land me on hospital bed with life threatening lupus complications? Or do I suppress my immune system for lupus and become more prone to everyday viruses and infections and end up being seriously ill. I can’t win in either case. To fight off this coronavirus I need to have a strong immune system but for lupus my immune system is purposefully “drugged” to be lethargic.
This is why people with autoimmune condition such as lupus are at a higher risk of catching this coronavirus because most of us are on immunosuppressant medications.
You must have heard that Hydroxychloroquine (or Plaquenil), was said to be preventing, treating or curing coronavirus. According to COVID-19 Global Rheumatology Alliance Registry, this is not true and there is on-going research on this.
Also, if you have an underlying health condition or autoimmune condition such as lupus, then please be pro-active into identifying symptoms of sars-cov2. Lupus and coronavirus symptoms overlap so please pay extra attention to your body if you start experiencing fatigue, muscle pain, fever and at the same time dry cough, shortness of breath, loss of smell or taste, chest pain, etc.
For people with lupus, we should be strictly protecting ourselves from catching coronavirus and everyone else should be strictly preventing spread of coronavirus.
For us lupus sufferers, we could take these measures to prevent ourselves from catching coronavirus:
- Stay in one bubble and limit physical contact with people outside of your bubble.
- Learn to say no to visits, family gatherings or visits to a sick relative. Most importantly, you know what’s best for you and should be able to decide for yourself.
- For those of you who are working, talk to your employers to make work arrangements so that you are not compelled to board public transports at peak hours or be in crowded places.
- Don’t be afraid to ask for help from family and friends to run errands for you like shopping or getting prescribed medications.
- It’s okay to focus on your own mental health and well-being. Do things to avoid physical or emotional stress.
- Pay attention to other lupus triggers and take pro-active steps to manage those. I am sure the last thing you would want is to sit in hospital waiting room full of other sick people.
- If you have to go outside, wear a mask, use hand sanitizers, maintain distance from others, and avoid touching eyes, nose, mouth or face.
- Even though we are practicing physical distancing, do stay connected with loved ones through your phones or computer, stay informed on the developments of coronavirus cases in your locality, exercise and be active, and eat healthy.
For those of you with lupus, if you do contract coronavirus, then continue to take your prescribed lupus medications and contact your doctor immediately.
Source:
What causes Lupus?
There is no one known cause of lupus and no one knows why our immune system – our body’s army gets confused and starts attacking its own self. Many online articles suggest that lupus could develop in response to a combination of factors – it could be through exposure to medications, infections, and environmental factors. It could even be genetics or hormones.
Here’s a bit more information on the potential triggers of lupus:
- Genetics – researchers say there may be more than 50 genes which are likely to contribute towards lupus, though there is no evidence to suggest that these genes directly cause lupus. Having these genes could set the scene, but it is other environmental factors that contribute to whether or not you will develop lupus, and when. Having the lupus gene does not necessarily mean you will develop lupus, and not having the gene does not necessarily mean you will not develop lupus! You could still get lupus without having any family history of it. Though anyone can get lupus, certain ethnic groups may be at a higher risk – like people of Africa, Native America, Asia and the Pacific Islands. Also, lupus affects people of all ages, but it is most often diagnosed between the ages of 15 and 45.
- Hormones – lupus is more common in women than in men – 9 out of 10 cases of lupus are in females, hence, research suggests that female hormonal activity, which could be the production of high oestrogen, use of contraceptive pills or pregnancy that could onset lupus. Once again there is ongoing research beyond hormonal levels which could shed some light on why women are more prone to lupus than men.
- Environmental factors could trigger lupus in genetically susceptible people –
- Sunlight – exposure to direct sunlight could trigger an internal autoimmune response and could set off that dormant lupus gene. There is on-going research on harmful effects of ultraviolet rays from the sun to exposure to fluorescent light on lupus sufferers.
- Various infections and viruses – like the common cold, zika virus, Ebola, tuberculosis, – these could also initiate lupus.
- Exposure to chemicals in the environment – examples of chemical exposure could be paint fumes, drugs, detergents, cylindered gas, etc.
- Medications – lupus could be triggered by certain type of medications, but usually medical drug-induced lupus gets better once the medication stops.
- Stress – it could be emotional stress, mental stress, breakups, death in the family, or just other lifestyle complications. It could also be stress to the body through surgery, injury, pregnancy, and so on.
What is Lupus?
Lupus is a chronic autoimmune disease that occurs when our body’s immune system, which is our body’s defence mechanism, attacks our own healthy tissues and organs.
Normally our immune systems produce ‘antibodies’ which protects the body from infections and diseases, however, when our immune system is unable to differentiate between foreign invaders and body’s healthy tissues then ‘autoantibodies’ get created with attacks your healthy tissues and organs.
This causes inflammation and affects many different body systems like your skin, joints, blood cells, and organs such as brain, heart, lungs, and kidneys.
Causes and cure
Currently there is no known cause of lupus and as a result there is no cure for lupus, however, medication and treatments can help control the symptoms of lupus. Lupus can be difficult to diagnose because its signs and symptoms often mimic those of other ailments.
I will discuss the causes, signs and symptoms in my upcoming videos and blog post, so please subscribe to my Youtube channel and blog post.
Types of Lupus:
- Systemic lupus erythematosus (SLE) or lupus. This is the most common type of lupus.
- Discoid lupus causes a red rash usually on the chest, face and back and that doesn’t go away.
- Drug-induced lupus is caused by certain medicines. It usually goes away when you stop taking the medicine.
- Neonatal lupus, which is rare, affects newborns. It is probably caused by certain antibodies from the mother.
- What Lupus is NOT!- Lupus is NOT contagious.- Lupus is NOT like or related to cancer.- Lupus is NOT like or related to HIV or AIDS.
Once again stay tuned to learn about the different types of lupus and its effects through my Youtube channel and blog posts.
What Lupus is NOT???
- Lupus is NOT contagious.
- Lupus is NOT like or related to cancer.
- Lupus is NOT like or related to HIV or AIDS.
Resources:
What is Lupus? – an overview
Invisible illness – lupus experience
Hi there, I have created this page to raise awareness on an invisible chronic autoimmune condition called Lupus. In 2007, I was diagnosed with Systemic Lupus Erythematosus (SLE) which has since changed my entire life.
For a very long time I was hiding my illness from everyone and tried to act like nothing was wrong with me. Most of this was out of denial, fear, shame, and even self-hate from thinking it must be ‘bad karma’ from my previous life. I would be in so much pain, yet I pretended to be all okay. No matter how much I wanted to be surrounded by my family and friends, I had shut everyone out of my life out of fear that no one would understand me if I told them about my condition or some would look down upon me or even make fun of my condition. I distanced myself from my loved ones because I did not want them to see me in pain and worry about me. I was leading a very lonely life which only added to my pain, sickness, depression, anxiety and self-hate.
Recently I had changed jobs and would spend nights wondering how would I explain about the various doctors appointments that I need to attend to – I don’t look sick, I don’t sound sick, my sickness is invisible! My professional work history would give no indication that I could be battling a chronic illness because I have always been a high achiever. Nevertheless, I entrusted my HR Manager and told her about my condition and I was pleasantly surprised as I felt she ‘got me’! Not only did I feel accepted, understood and supported, I started gaining self confidence and performing even better at work. That was the turning point for me.
I realized that I could have made my situation worse had I not shared with my HR Manager and work colleagues. I realized not many people know about lupus or invisible chronic illnesses. I realized life would be much better if us lupus sufferers spoke about our condition – yes, there are many people who would not believe us because our illnesses are invisible but there are many more people who would become aware and sensitive to our condition and needs. WE NEED TO EDUCATE PEOPLE!
Hence, it is with this aim, I have started my video and blog posts – to create awareness on invisible illnesses. I will share my experience of battling with lupus for the last 13 years and how painstakingly one day at a time I have learnt to accept my lupus condition, the lifestyle and career changes I have made, how doctors had given me 12 hours time to pull through my lupus flareup, how I have taken proactive steps to manage my condition, and how I have changed my attitude for my own self empowerment.
Also, I would like you to understand that it is not easy to talk about my lupus experience as it is very personal and discomforting. I am not opening up with my lupus experience to gain sympathy or complain about my life – its actually the opposite. I am sharing my experience to make everyone aware of the difficulties people like me face in their daily lives. I am sharing my experience to empower people like me to live a more fulfilling life. I truly believe that people in general are good at heart and would make an effort to support us if only they are made aware of our invisible sufferings.
Therefore, please subscribe to my YouTube channel – Lupus Comforts for hear my lupus experiences.
You can find out more about lupus on https://www.mayoclinic.org/diseases-conditions/lupus/symptoms-causes/syc-20365789
