Lupus: Information on the Disease, From Symptoms to Testing to Medication
Lupus has been described as a medical mystery by doctors and the general society for years because it is unusually difficult to detect. There are no real standardized tests to diagnose the disease because the symptoms are often vague and vary greatly from person to person. Usually the pain is slow and non-descript in the beginning, but eventually advances to aches and pains, sprains, bruising, or fever. Every doctor that you see tells you that your child has something else and you may get lots of different diagnoses. Nothing the doctors do ever seems to help and your child stays sick, and you don’t know why. When you finally reach the diagnosis of Lupus it can bring a flood of anger, denial, sadness, and devastation. Lupus changes the entire life of the patient and the people who take care of them, especially parents.
What is Lupus?
Lupus is an autoimmune disease that is closely related to the science of rheumatology. Most people suffering from Lupus complain of joint pain in the hands, neck, legs, knees, shoulders, back, wrists, elbows, ankles, and feet. What happens with Lupus is that the body begins to attack itself thinking that there is a virus or germ there. The body will automatically try to eliminate the attacker, only to cause physical and emotional pain. Lupus can strike any part of the body, mainly in joints and muscles, but the kidneys, heart, lungs, brain, bones, and skin can all be affected by the disease. Persons suffering from Lupus, with proper treatment, can be restored back to their previous condition but it can take years and multiple visits to the doctor.
Why is it so Hard to Diagnose?
The number one reason why it is so hard to diagnose is because the symptoms vary greatly from person to person. Some have joint problems while others feel great stresses and extreme exhaustion. The second reason it is hard to diagnose is because many child physicians do not include Lupus Disease as one of the childhood diseases they screen patients for.
When you have a child that is constantly not doing well there may be a problem. Sometimes there are multiple issues like cramping, dry skin, and depression and they may seem confusing and unrelated but it is important that you bring it to the attention of a specialist. If your child is inexplicably lagging and it never goes away it is probably right to suggest a blood test to discover if your child may have Lupus Disease.
What Kind of Tests are there for Lupus Disease?
Mainly, most physicians use A&A testing which is a blood test that determines whether or not the disease Lupus is present in your blood system. A&A testing alone is not the only way of determining whether or not your child has Lupus. Many people without Lupus have the hormone present, but it is not active within their system so further testing is needed after A&A. Combined with the symptoms it can be properly diagnosed by a specialist. For example if your child is active in sports, but always seems to have sprained ankle of knee maybe you should look into Lupus testing. With normal activity it is normal for most children to have some wear and tear on the body, but when it becomes excessive it may be showing there is a problem with your teen. If this is the fifth or sixth sprained ankle you should consider taking them to the doctor.
Does Family History Contribute to Lupus?
More often than not there is no family member that has had Lupus or any similar disease. Sometimes it does it exist though, but never through a direct link. It is usually a cousin or aunt or another member of the extended family. It is rare for two sisters to have the disease.
What are the Signs and Symptoms?
As mentioned before the signs and symptoms of Lupus Disease are almost always different from person to person. Medical myth tells people that the only sign of Lupus is the butterfly rash across the face, but this is not true. There are a host of varying symptoms ranging, but not limited to the following:
� Fatigue/Extreme Exhaustion
� Failure to Achieve and Succeed
� Joint Pain
� Physical Pain
� Emotional Pain/Stress
� Joint Cramps
� Severe Weight Loss
� Feeling Weak or Drained
� Not Feeling Well in General on a Daily Basis with no Apparent Cause
� Inability to grip onto silverware, glasses, or other objects.
� Inability to walk or carry things far distances.
When Lupus strikes it not only affects the life of the patient but also friends and family. Parents are especially affected emotionally by this disease because it often strikes during puberty; a time when you still need to care for your teen. You can never forget that your child has Lupus because they are sick every day and it’s a constant reminder. Lupus Disease is an emotional roller coaster that affects everyone involved. Through the hills and valleys of depression, sickness, and physical torment
Some the Medications do have Side Effects.
When dealing with steroids in particular you may see a wide variety of side effects ranging from acne, weight gain, and hair loss. Because many physicians believe that the only way to treat Lupus is to use steroids it is important to make sure that you find an experienced specialist that knows what they are doing. Steroids are not the only option for treating Lupus these days. Combined with therapy, steroids are generally used in the lowest dose available in order to avoid the side effects. Low doses can also be very effective when dealing with mild cases.
The medication really changes the life of the Lupus patient. They have to take a pill everyday, and as a parent you feel like it is your duty to remind them of it each day. It’s like learning a new routine and it can be very hard for teenagers to stick with it. Failure to follow through with the medication can result in serious long term health issues and it is the biggest problem that most patients suffering from Lupus face on a daily basis.
Lupus is like a slow burning fire and you have to keep it under control. The minute you are not paying attention the fire flares up and more damage is done, which can worsen many of the symptoms and their intensity. If you have questions about the medications ask your doctor and stay on track with the medications. It is very easy for your teen to stray from the routine because often the medications do not make them feel better, or worse; they just feel the same. The diagnosis is only the beginning; the rest is a lifelong emotional and physical battle with the body.
Living with Lupus
When it comes to Lupus, you never know what you are going to wake up to. Every daily, meaningless (to us) task is a small battle. There are lots of daily meds, sometimes seven or more daily, and it can take a toll mentally and physically on the Lupus patient. Sometimes the medications cause weight gain and loss of appetite which can lead to depression and other emotional problems. Also, the memories of past pains and struggles are both hard for the child and parent to deal with on a daily basis. Everyday is an emotional struggle and life is hard for everyone involved, not just the person with Lupus.
As you get older it’s best for the teen to get involved in their care. It is typical for a parent of a child with lupus to care for them into their 30s or even 40s, but parents will not be around forever. Most people think of Lupus as coping with great difficulty because it is a hard disease to deal with. Your child never feels better and is always sick, every day for the rest of their life. It is important to associate good things, like a great day, week, or month but most times it is hard.
How Do You Explain Your Child’s Illness to People?
Most people keep it a secret for a very long time, well after their teen has reached their 20s. But, it is important that you disclose the disease early. At first most people may make excuses like it’s the Flu or a really bad cold but it is much often better to tell the truth when it comes to Lupus. You will be surprised how many people will come to your aid and support not only you but your teen as well in the effort. Slowly, close friends and family will come to accept and understand the disease, but only with your teaching. Of course, make sure that your child is ready to let people know about the disease they are suffering with before you just blurt it out in the middle of church, or in a crowded supermarket.
What about Pregnancy and Child Transmission?
Often, there is no concern for the children of a mother with Lupus and the percentage of recurrence in offspring is very low; less than 1 in 50. Generally, doctors are more concerned about the mother’s health while carrying the baby, and also during the birthing process because the pregnancy can cause a lot of added stress to the already strained Lupus patient. Pregnancy for the Lupus patient is dangerous, but no more so than for a person suffering from diabetes or anemia. As with all pregnancies involving complications there are certain things to be done to help ease the process for all involved, especially the mother.
Research
There is always new research, but it is difficult to decipher and hard to stop the disease. When you stop the disease completely with medication it is hard for the immune system to remain in working order. But researchers are getting closer every day. The first thing you should do is find a specialist who really knows what they are doing when it comes to treating Lupus Disease. It is also extremely important to follow the instructions of the doctor to avoid long term risks. Make sure your child is getting the latest state of the art care.
Lupus requires constant attention and you must remain positive, as well as stay active in the community. Work with the doctors to find the best treatment for your child, and let them describe their symptoms as well as ask their own questions. The important thing is to remain positive and not get depressed. Today there is a lot more information available than ever and it is important as a parent that you know about it.
If you are looking for more information on Lupus there are many available resources that you can access by phone and online. For a free booklet about Lupus you can call 1-866-812-4494 and simply ask for the Teen Lupus Booklet.
For More Information You Can Visit These Websites:
The Lupus Foundation of America
http://www.lupus.org
Ph. 1-202-249-1155
The Lupus Alliance of America
http://www.lupusalliance.org
www.info@lupusalliance.org
Ph. 1-866-415-8787
