By: Nicole Castellano and Tina Armitage
Lupus is a hereditary autoimmune disease that can present itself anywhere from early childhood to later in life. The causes of lupus are still basically unknown, though many theories indicate that there are genetic, environmental and hormonal factors that cause lupus to be triggered. Morbidity and mortality may be related to late diagnosis, lack of proper care, ineffective treatments or a patient’s resistance to treatment.
There is currently no cure for lupus and very little treatment for patients, even though it affects 1 in 185 people. So right now someone you know either has lupus or they know someone who does and there is almost nothing we can do to cure them.
Congress only recently asked the United States Centers for Disease Control and Prevention, better known as the CDC, to create two population-based Systemic Lupus Erythematosus (SLE) registries with the primary purpose of generating better incidence estimates for Caucasians and African Americans affected by lupus. According to the CDC, the mortality rates for those with lupus have almost doubled from 879 deaths in 1979 to 1,406 deaths in 1998. DOUBLED? The risk of death increases as the patient ages (35% were age 15-44). The highest death rate is among African American Women between the ages of 45-64 years of age.
According to the CDC, causes of death from lupus are never directly related to lupus. Because lupus is an autoimmune disease and can affect many different areas of the human body, the cause of death tends to be linked to things like, organ failure (kidneys for example are a big one), infection, or cardiovascular disease from accelerated atherosclerosis. They also listed lupus as having a relatively high mortality rate among the Rheumatology conditions.
In my research, I have found that many of the websites pertaining to lupus, try not to scare the patient and instead they sugar coat these situations. However, lupus patients need to make sure they understand the consequences of not following doctor’s orders, making sure they maintain a healthy lifestyle and being honest with their doctors about their symptoms, if they want to keep the wolf at bay. They do not want to be one of the 77,000 hospitalizations, from lupus, that occur each year in the United States.
Unfortunately, lupus is not like or is sometimes too much like other diseases. It is often called “the great imitator” because symptoms vary so greatly that it can look like any of a hundred or more different diseases, which makes it very difficult to diagnose. For me, it took 27 vials of blood, 12 trips to the lab, 7 biopsies and the biggest needle that I have ever seen in my life being plunged into my neck, before they even had a clue what was going on with me. It was not because I did not have good doctors. My doctors were awesome. They actually believed me when I repeatedly came into their offices with a whole array of crazy symptoms. For most people living with undiagnosed lupus, the delay in diagnosis comes from their doctors just not believing that they could possibly be suffering from that many different symptoms. Often patients are turned away with judgments of depression, exaggeration, or anxiety all while their body was actually fighting with itself. A lot of times when dozens of tests come back negative, the doctors begin to think the patient’s complaints are all in their heads, when in fact, it is in their gut, where their immune system is short circuiting and attacking the body.
The most common form of lupus is Systemic Lupus Erythematosus or SLE, which attacks many parts of the body and is the most dangerous. SLE accounts for about 70% of lupus cases. SLE is dangerous because many times it attacks the kidneys, lungs, heart, brain or central nervous system.
Another form of lupus is Discoid Lupus Erythematosus (DLE), which affects the skin, causing lumps, rashes, hair loss, nose and mouth ulcers and redness with irritation.
The next form of lupus is neonatal lupus which typically resolves itself by the sixth month of pregnancy. However, if the baby’s heart was effected, surgery will be needed after birth for a pacemaker.
Drug induced lupus is caused by certain medications and can be stopped when the medicine is stopped. There are about 50 drugs that can cause drug-induced lupus including several that treat heart disease, thyroid disease, hypertension and neuropsychiatric disorders. There are three medicines that are typically affiliated with drug induced lupus: Pronestyl, Apresoline and Quiniglute. However, according to the Lupus Foundation of America, this type of lupus is very rare.
It is also important to know that some medicines can significantly affect the symptoms of lupus for those who are newly diagnosed.
SPREADING THEIR WINGS WITH LUPUS
With September behind us, my Facebook page has been inundated with photos of all your beautiful children going off to school and the collective sigh of relief from mommies all over the world. Not that you do not love your children, but it was a long summer of “Mommy, I am bored what are we doing today?” In addition, I bet your toes and fingernails could poke an eye out just by moving the wrong way. In all seriousness though, as much as all the moms joke around about back to school days, it is sometimes a difficult time for mommies and daddies because in some cases, they are letting their children go somewhere without them for the first time and that can be traumatic for both the parents and the children. Now add in another terrifying factor: imagine your child has an incurable disease that can attack any part of the body at any time and there is very little that can be done to prevent it and very little treatment available, depending on how the disease choses to present itself. Well that is what parents of children with lupus deal with every day. Every time they let their children out of their sight, they need to worry about them becoming ill. So what do you do when your teenager tells you they want to go away for college? Panic, tell them absolutely not; hold them back from experiencing what so many other teens get to experience all because they have lupus? Well that doesn’t seem very fair to me, but I am not a parent, so what do I know?
There are a lot of factors that need to be considered. Is their lupus managed? Is your child mature enough to handle being away from home yet? How far away do they want to go to school? I can’t tell you what decisions to make, however, as a fairly mature women with lupus, maybe I can give you some guidance so that you are your teen can come up with a plan that can keep you from becoming prematurely gray and allow your child to pursue their dreams, despite lupus. Some of these thoughts can probably help teen lupies and their terrified parents navigate the perils of high school as well.
Teens with lupus need to use special time management tools when it comes to keeping up with school, keeping their grades up, being involved in extracurricular activities, spending time with friends and managing their disease. However, with the proper planning, you and your teen can learn how to work together towards independence, so that when it is time to make decisions about college, you can both feel comfortable with your teen butterfly spreading their wings and starting their own voyage to adulthood.
Firstly, if memory loss or impairment is a symptom your teen is suffering from, they need to get in the habit of writing things down to help them remember, because when they are at school, mommy won’t be there to remind them.
Resting and fueling your body is not an option when you have lupus, it is a necessity. Lack of rest and poor nutrition is one of the leading causes of flare ups in our disease. After school or during free periods, should be used for resting and refueling. Once your body has been given what it needs, you are much more capable of handling classes, homework, sports or other school related activities. Also, no all-night study sessions. People with lupus usually need more than the average six to seven hours a night of sleep that most people get. For people with lupus, their bodies are in a constant state of fight, so obviously, they need longer to recoup the energy lost. Our bodies really need more like nine hours a night to really get back what we lost during the day.
Be proactive about your daily schedule and incorporating time to take care of your body. If you take the time in the beginning of the week or month to write out a schedule, you will be more capable of handling the responsibilities you have given yourself. Also, don’t forget to add a little extra time for those unforeseen ‘emergencies’ like going to see a movie with the cute boy in Chem class or grab a latte with your friend who just got dumped.
If available, take some courses online. The whole idea of home schooling is not just for scary religious people anymore. During grammar and high school years, online classes are a great alternative for helping the child stay in the classroom if they choose while being able to take some classes at home at their own pace. For college, it is just part of the norm these days so it is pretty easy for lupies to schedule classes at school and online to match their level of ability, even if their disease requires them to rest more or spend more time going for treatment. If you are receiving IV treatment you can bring your computer with you and go to class while getting your medicine which is an awesome time management idea.
These days schools are also much more willing to work with students so that they will be successful. Guidance counselors are available to all students to work with them and help them successfully reach their goals. There are so many programs available to help disabled students be successful. The student just needs to reach out and ask for help. Don’t be shy or embarrassed about needing help.
With today’s laws no one has to discuss their diagnosis with anyone. This is a double edged sword when it comes to a mysterious disease like lupus. With other diseases, it is usually visually obvious that the student has a disability so the school’s faculty will make any necessary accommodations without too much of a fuss. With lupus however, most of the time, the student ‘looks’ just like everyone else so other students, teachers, and faculty do not know that the student is sick; only that the student acts weird. (Think about Michael Jackson walking around with the mask on. Because he did not tell anyone he had lupus, his behavior was weird and off putting. If people had known, it would have been easily accepted and understood.) So for each student with lupus, they need to make a very personal decision. Do I tell everyone I have lupus and deal with the repercussions of that disclosure or do I not tell anyone what is happening with me and just let them think I am the weird kid and get made fun of and bullied? It is a very personal choice, but lack of awareness is one of the reasons that lupus is underfunded for research and why there are limited treatments available.
So parents of lupus children preparing to graduate high school, take a deep breath and get ready to impart all your lupus knowledge to your child in preparation for the days when they won’t have you there to tell them what to do. You have about a year to prepare them to take their first steps toward independence with lupus. In some ways, it is not much different than what other parents go through, except that there are more consequences when your child makes mistakes or doesn’t take care of themselves. All you can do is trust that you raised them right, taught them how to manage their disease and how to ask for help when they need it. Now just let go and breathe.