If you love someone fighting lupus, you very likely know that this disease is an autoimmune disorder. This means that the immune system is out of sync and attacks healthy body tissue.
It just cannot distinguish the threats from the benign elements. The result is usually painful inflammation of the joints. Its official name is Systemic Lupus Erythematosus (SLE). Symptoms range from mild to severe and the disease may manifest itself in joint pain, chronic fatigue, skin rashes, migraines, ulcers and may damage internal organs such as the kidneys and heart.
If you have a loved one struggling with lupus right now, there are a few choice misconceptions that others believe and that you should keep in mind as you support them.
1. They have an easily understood disease
In spite of the fact that 1 in 185 Americans suffer from lupus, the majority of the population is extremely ignorant about this disease. They also think it is contagious, which is completely false and they persist in thinking that only the elderly are affected.
The reality is that the most common age group to be affected is actually in the 15 – 45 range. Only about 10% of lupus sufferers are men, so it is generally a women’s disease. Thanks to Toni Braxton, the reality TV star and award winning singer, who has come out about her daily battle with lupus, there is more public awareness now of what the disease involves.
Watch the video of Toni here,as she describes some of her daily struggles.
2. They are very lazy
Few people understand any condition which involves chronic fatigue and they just assume that the people are plain lazy and they ought to get on with it. This applies to many diseases such as chronic fatigue syndrome (CFS), and lupus is no exception. Toni Braxton describes it as like having the flu, but every day.
Telling their doctor that they are tired is often very difficult as you can see from the sufferers’ comments here on the Lupus Foundation of America’s Facebook page. The fact that this post was liked by more than 1,000 people speaks volumes.
You can support your loved one better by bearing in mind that they will almost always need more rest than anyone else in the family or circle of friends.
3. They cannot have children
Lots of people mistakenly think that a woman with lupus may have a very risky pregnancy and that the child will be born with some birth defect. This is just a myth though, as the risk of birth defects with a woman with lupus is exactly the same as any normal pregnancy.
Women with lupus are generally advised to plan their pregnancy when their disease is in remission though. This normally makes things much easier for them.
Lupus sufferers have to be carefully monitored as there are some dangers, but they very often carry a child successfully to term. There is a small chance that the lupus condition can be passed on to the child, but in reality, these risks are minimal.
4. They can be easily diagnosed
Diagnosis is not just simple blood work and many people think that a visit to the doctor can confirm the diagnosis. But it is much more complicated than that. This disease is often called “the great imitator” because its symptoms could be many other diseases.
In addition, there are flare ups which mean that the disease may come and go, and change over time. The doctor, if she suspects lupus, will order a complete set of laboratory tests. Antibody testing, a complete blood count, kidney and liver functions, and blood cells sedimentation rates are usually ordered.
Getting treatment is not that easy either, as the best person to treat it is usually a rheumatologist as that is also a connective tissue disease. This is also why doctors use the American College of Rheumatology guidelines to help them diagnose lupus.
There are just not enough rheumatologists to go around, which means that the best qualified specialist is often not available.
5. They probably got it from their parents
This is another myth, because the actual genetic factor is quite small, statistically. It is thought that only about 5% of parents will pass on the disease to their offspring. Research so far has failed to identify a gene or group of genes that might be responsible.
The fact that Native Americans, Native Hawaiians, African and Asian ethnic groups are at greater risk certainly suggests a genetic link. There are also environmental issues involved which specialists do not fully understand, as yet.
If you talk to lupus sufferers, you will find that the hardest part for them is trying to make friends and family understand what they are going through. Some of the symptoms are vague and that is part of the problem.
The mental and physical suffering is often brushed under the carpet by the sufferers themselves because they are not getting enough support and sympathy. Talking openly and honestly about this chronic condition is often the best way to help.
This is a great step toward accepting changes in lifestyle for family members and also helping to meet the patients’ needs.
“I was upfront about having lupus, but it never came up in the show. I didn’t want anyone thinking they had an advantage – there’s a fine line between what you tell and what you don’t.” – Leslie Hunt, season six contestant on ‘American Idol’
Featured photo credit: Fuente: Com Salud/ Com Salud Agencia via flickr.com