Lupus Awareness Month - 11 Facts to Share Right Now
Many of us who live with lupus still receive looks of confusion or hear false information being shared when it comes to the disease. While this can be frustrating, I try to look at it as a spotlight being shone on the fact that there is still so much work to do regarding lupus awareness and education. And what better time to share the facts than May, which is officially Lupus Awareness Month across the globe.
Have you ever heard any of the following statements:
- “Lupus? What’s that?”
- “It’s just lupus – it’s not serious.”
- “Can I catch that from you?”
- “You can’t have lupus – you’re a guy.”
- “You look fine so you can’t be that sick…”
If you have lived with lupus, you have probably heard the above statements and countless others. Ignorant statements not based on fact can not only hurt someone’s feelings that lives and struggles with the disease, but it can also then spread misinformation to other people. But we can combat the myths by arming ourselves with the truth.
Here are 11 facts to share about lupus right now with your family and friends:
1. Lupus is a chronic inflammatory autoimmune disease
The easiest way I explain this to someone is that in someone with lupus, their immune system attacks its own tissues and organs that it was originally designed to protect. Over time this causes inflammation and organ damage. The term "chronic" in the medical community means long-lasting and typically requiring ongoing medical care.
2. Lupus can take years to properly diagnose.
Speak to someone with a lupus diagnosis and you will usually learn how difficult the diagnose was to actually get. In fact, according to The Lupus Foundation of America, the average time span from the first symptoms to diagnosis is 6 years! It is believed the difficulty in proper diagnosis is partly due to the fact that some lupus symptoms also appear in other diseases such as rheumatoid arthritis, Lyme disease, multiple sclerosis, and fibromyalgia. Trial and error when it comes to blood tests – in addition to factoring in symptoms – can help lead to a diagnosis.
3. Lupus is not just a woman’s disease
While it is true that approximately 90 percent of the 5 million lupus patients worldwide are women, men also get diagnosed with the disease. The popular myth that lupus “is just a woman’s disease” does incredible damage to the male population with the illness by shutting them out of the conversation and in some cases, making them feel embarrassed to speak publicly about the disease. I’m happy to report that social media – particularly Instagram – is being used by some men with lupus (like my friend Brandon) as a tool for awareness and advocacy.
4. Lupus patients deal with a wide variety of symptoms
Lupus symptoms and their severity range from person to person but some of the most common symptoms include fevers, mouth and nose sores, rashes, fatigue, and hair loss. More severe symptoms may include kidney involvement, blood level issues (low platelets, anemia, low white blood cell counts), arthritis, lung and heart involvement, and neurological problems such as strokes and seizures.
5. Lupus is a financial burden on the patient
According to The Lupus Foundation of America, the average annual direct health care costs for someone with lupus is $33,223 and can go as high as $50,000 or more for people with severe organ involvement and active lupus.
6. Yes, lupus can be fatal
While most people diagnosed with lupus will go on to live a normal life span, thanks to better disease management options, it is estimated that between 10 to 15 percent of lupus patients will die prematurely due to complications from the illness.
7. There are 4 types of lupus
These types include systemic lupus, cutaneous or discoid, drug-induced, and neonatal lupus. Of these, systemic lupus accounts for 70 percent of all cases, and in half of these cases, the person will deal with a major tissue or organ being involved.
8. Lupus typically involves flares and remissions
It may be difficult for some people to understand why someone with lupus can seem to be functioning well one day and in bed for a week immediately afterwards. Lupus often exhibits itself in flare-ups (periods of disease activity and symptoms), followed by quieter periods (remissions). In addition, when someone with lupus pushes their body to the max when they are already feeling unwell, they may see an increase in fatigue and symptoms in the days following. This is why it is crucial for someone with lupus to manage his or her time well, not overexert when possible, and plan for periods of rest often.
9. People with lupus usually recognize triggers with time
The longer I have lived with this illness, the more I learn about myself and what triggers my symptoms. The sun is one of my greatest triggers and is a well-known trigger for many lupus patients. In addition, stress, infections, certain medication, and lack of sleep can also trigger some symptoms to surface.
10. Lupus is not contagious
It is believed that lupus has a genetic component, and researchers are still examining why certain people get diagnosed with the disease. Lupus is not contagious and you cannot catch it from drinking or sharing food with someone who has lupus, through sexual contact, or any other means.
11. Currently, there is no cure for lupus
This is why increased education and awareness about the disease is so important. Lupus patients are already limited on the types of medications they can take to manage the disease, and only one medication has been created and approved by the FDA specifically for lupus in the past 50 years. So, continue spreading the facts about this disease to every person you can!
Armed with this knowledge, you can move forward and make this one of the best Lupus Awareness Month to date! We can only dispel the myths and fallacies by spreading the truth.
Who do you turn to first for emotional support? (choose up to three)