Raising awareness about Lupus
There are millions of people around the world who are bravely facing diseases everyday. Some go unnoticed because they are not as common or very little is known about them, like Lupus, a disease that is still fighting to be heard. Keep reading to find out more about this disease and why each year on May 10th, we commemorate this disease with World Lupus Day.
What is lupus?
Never heard of lupus? Lupus is a disease is an autoimmune disease in which your own defence (immune) system attacks the cells in your body, without differentiating between external invaders and healthy cells.
This attack causes inflammation in various tissues in the skin and the joints, and internal organs can also be affected. Although a cure has yet to be found for this disease, there are treatments available that aim to minimize symptoms.
Signs and symptoms depend on the organ that the body as identified as foreign or threatening, so no two cases of lupus are the same. Symptoms can vary greatly from person to person, but some common symptoms include:
- Fatigue
- Fever
- Pain, stiffness and swelling in the joints
- A butterfly-shaped rash on the face that appears on the cheeks and the bridge of the nose, which is one of the tell-tale signs of the disease
- Rashes on other parts of the body
- Lesions that appear on the skin or that get worse when exposed to the sun (photosensitivity)
- Fingers and toes turn white or blue when exposed to the cold or in stressful situations (Raynaud phenomenon)
- Shortness of breath
- Chest pain
- Dry eyes
- Headache, disorientation, memory loss
Lupus is characterized by episodes, or flare ups, where rashes and other symptoms get worse for a while, then improve or even disappear completely for a time.
We still don’t know the exact reason why the body starts attacking itself, but a defect has been found in the white blood cells, the body’s main defence against infections, which causes the immune system to mistake normal, healthy cells for unhealthy cells, which is why they attack them.
It is also believed to be caused by a combination of genetic factors (inherited from our parents) and environmental factors (e.g. exposure to sunlight, infections and certain medications).
The 4 main types of lupus
But what is lupus and how does it manifest? According to the Lupus Foundation of America, there are 4 main types of this disease which are categorized by the way the symptoms present themselves:
- Systemic lupus erythematosus (SLE): it impacts the entire body, hence why it is called systemic. It can cause inflammation in one or several parts of the body (skin, joints, lungs, kidneys, blood, heart, etc.) This is the most common type of lupus.
- Cutaneous lupus erythematosus: as its name suggests, this type of lupus only affects the skin (red, scaly patches on the face, neck and scalp).
- Drug-induced lupus erythematosus: It is caused by a reaction to certain medications, such as those used to treat seizures and high blood pressure. This is a very rare type of lupus and disappears after the patient stops taking said medication.
- Neonatal lupus: Although most people with lupus develop the disease between the ages of 15 and 44, in some cases, newborn babies can inherit SLE from their mothers. This is a very rare condition and most women with SLE give birth to healthy babies.
Myths about lupus
Ignorance is not bliss when it comes to our health. Here are some facts to clear up some common misconceptions or myths about this disease:
- It is not contagious, meaning it cannot be passed from one person to another.
- It is not a type of cancer and is not related to that disease. It can sometimes be confused with cancer because similar medication is used to treat it.
- It is not a virus, is an inherited or acquired genetic alteration.
- It is not a death sentence, whilst there is no definitive cure, treatments can reduce the severity and frequency of flare ups.
- It does not just affect adults, it can develop at any age. However, it is more common in women of a childbearing age (between the ages of 15 and 44), due to hormonal reasons.
Lupus is not to be taken lightly
The inflammation that causes lupus can be very complicated and cause serious health problems that require serious medical attention. Remember, this condition is systemic, meaning it attacks various parts of the body. Here are some of the health impacts of lupus:
- In the kidneys, it can cause serious renal damage; in the brain and the central nervous system, it causes headaches, dizziness, changes in behavior, vision problems and even strokes and seizures.
- In the blood and blood vessels, it can cause anemia, a greater risk of bleeding or blood clots and inflammation of the blood vessels (vasculitis). In the lungs, it can increase the chances of developing inflammation in the lining of the chest cavity (pleurisy), which can make it difficult to breathe.
- Lupus can also cause inflammation of the heart muscle, arteries or the membrane surrounding your heart (pericarditis). It can also increase the risk of heart disease.
Yes, it can be treated!
The good news is, lupus can be treated. If you are experiencing symptoms, the first and most important step is to see your doctor to get a proper diagnosis.
Conventional treatment includes taking medication to control the immune response in your body, known as immunosuppressants. Additionally, medication can be taken to reduce symptoms such as swelling, pain, joint damage and to balance hormones.
There is also a range of complementary treatments available that can help reduce the stress associated with living with a chronic illness.
Medicinal cannabis
It has been shown that pain relief and inflammation are two commonly recognized therapeutic properties of medicinal cannabis for symptoms in the joints and rashes on the body and face, making it an effective complementary treatment for lupus.
High levels of cannabidiol (CBD), one of the compounds (cannabinoids) of medicinal cannabis, is key for treating lupus. This is due to the fact that the endocannabinoid system, which we all have, can help regulate the immune system.
Optimal concentrations of CBD and other cannabinoids can reduce the inflammation characteristic of lupus and other autoimmune diseases.
Adapting to the disease
Being diagnosed with lupus does not mean that you cannot carry on with your life, but it does require you to be adaptable. Seeing your doctor regularly, following their advice, researching complementary treatments and maintaining healthy habits will all help to improve your general quality of life:
Take care of your body, free your mind of stress and pay close attention to any changes. Here are some simple measures you can take to help prevent flare ups and, if they do occur, help you cope with symptoms:
- Get regular checkups, do not let symptoms progress
- Exercise regularly
- Try meditation, it has been known to help with pain
- Protect yourself from the sun, ultraviolet light can trigger flare ups
- Say no to cigarettes, smoking can aggravate the effects of lupus on the heart and blood vessels
- Maintain a healthy diet, rich in fruit, vegetables and whole grains
- Ask your doctor whether you should be taking vitamin D or calcium supplements.
World Lupus Day
Every year, May 10th is dedicated to World Lupus Day to commemorate the five million people across the world battling some form of lupus (Lupus Foundation of America).
Glaucy Trolesi, a 43-year-old woman from Brazil, is one of these people. About 20 years ago, she was diagnosed with lupus and, like many others in her position, had no idea what was going to happen to her. Glaucy has spent the last 20 years of her life learning to cope with this disease.
“When they diagnosed me, there was not a lot of information out there about lupus. When I researched it on the internet, I was terrified. Then I spoke to my doctors who were treating me and they explained what lupus actually was. They assured me that it is possible to treat and that it affects every patient differently”
Glaucy
Glaucy emphasizes the importance of sticking to a treatment plan, attending regular checkups and the discipline required to keep flare ups under control. Lupus is a very aggressive disease and if it is not properly treated, it can continue to get worse.
“If you have been diagnosed with lupus, don’t panic! Look for credible information and try not to believe everything you read online. Follow the treatment plan recommended to you by your doctor. What has also really helped me in this journey has been connecting to my spiritual side. Lupus is related to your emotional state, so getting in touch with my spiritual beliefs has helped me control my emotions”.
Glaucy
Glaucy has since graduated as an attorney and now works in event planning. She has been married for 6 years to her husband Fernando Machado, who is a source of unconditional love and support to Glaucy.Like many lupus patients, Glaucy leads a full life as a woman, wife and working professional. Lupus should not limit the dreams and achievements of those who suffer from it.
Help raise awareness!
Fame can be a great way to raise awareness for diseases like lupus. Since the actress/singer Selena Gomez publicly announced that she had lupus in 2015, awareness for the disease has continued to grow.
World lupus day is an initiative that was started as a global call-to-action, which you can follow on social media using the hashtags #WorldLupusDay and #LupusAwareness.
The goal is that more and more people find out about this disease, and there is an easy way that you can help spread the word. If someone asks you about this disease, share this article with them!
The more people who know about lupus, the more awareness and support lupus patients will receive. They should not have to face this disease alone. Show your support and start making a difference by joining the #butterfliesforlupus2019 challenge.
Sources
Lupus [Mayo Clinic]
Lupus [Mediline Plus]
What is lupus [Medical news today, 2018]
Cannabinoids and the Immune System: Immuno-Cannabinoid Effects [Leafly, 2015]
Treating lupus with cannabis [Leafly, 2013]