My statement of purpose is to analyze the website of curejm.org. It is an organization that is affiliated with Juvenile Dermatomyositis. Recently, my cousin was diagnosed with this illness. I hope that my paper will let people know about the illness and become more understanding of people. Also, I want people to be aware of it and know all the signs and symptoms of it, in case they or someone that they know gets it.
-I need to look at all the pictures on the website and how to portray what it is like to have JDM. I will talk to my cousin and see if she agrees that they correctly portray it.
-How they use words and colors to draw the person looking at it and if it is an effective way to make people aware about the illness.
Audience: I need to make my audience know that it is a serious illness and then maybe they will be more interested in the topic. I also need to understand that not everyone is interested in the same things that I am. Also I cannot use terminology that we use in nursing school, because someone who is a business major may not understand.
My Ethos: I need to show my readers that I am passionate about the topic because someone very close me to has it.
My Logos: I will use it to discuss the facts and scientific research.
My pathos: I have a personal connection with this illness and I can ask my cousin how she feels about the website and it really shows what it is like to have JDM.
Choice of medium: I will be writing a paper.
Ideas about arrangement: I will start off with an overview of what the website looks like and what my thesis statement is. I will then go into detail about all the pictures and links on the website. I can also talk to my cousin and have her review the website and give me her opinion.
What if one day you thought everything was normal and then you realized that you may never be able to do every day activities again? This describes the life of someone who has just been diagnosed with Juvenile Dermatomyositis. JDM is an autoimmune disease that can cause a skin rash and weak muscles, although there is no known cure, there are many medications that can suppress the symptoms of this illness. There are a few tests that doctors can run to diagnose someone with JDM. If the illness is caught soon enough the patient may be able to regain all strength back and live a healthy normal life. When someone becomes diagnosed with Juvenile Dermatomyositis it can change the way they live in many different ways because they have to adjust to taking medications. They also have to be aware of the precautions they might have to take.
Juvenile Idiopathic Inflammatory Myopathies (JIMM) are a group of rare, autoimmune diseases that have symptoms of muscle weakness. The most common member of this group is Juvenile Dermatomyositis, along with having symptoms of muscle weakness a skin rash is also seen in a patient. Any form of a JIMM is so rare that most doctors will never see a case while they are in the field of medicine, this can cause early diagnosis, which is important, very difficult to accomplish (Laxer 365).
For any illness, a patient might not have every single sign and symptom, so some patients might not have muscle weakness and only have a rash. Muscle strength is the most important symptom that doctors assess. This is because if not treated soon then the patient could lose their muscle coordination. Although muscles weakness can happen with any muscles in the body the most common are the shoulder, hip, paraspinal, and abdominal. One could also have weakness of the throat muscles also known as dysphonia. This is detrimental because it could cause one to not able to carry out the action of swallowing (Laxer 366). Some other symptoms include fever, weight loss, and fatigue. Fatigue can cause the patient to not carry out much activity like they normally would. Most students can only go to school for a few classes causing them to potentially fall behind in class work.
There are a few tests that doctors can perform to test the strength of the muscles. One is Manual Muscle Testing (MMT), which is used in everyday physical therapy testing. Using dynamometry they test the muscle strength using strength measuring devices. In order to assess the body it is divided into different group muscles. Pressure is applied on each muscle and the doctors look for how the patient reacts to the pressure that determines what “grade” they receive. If the patient can hold the test position against strong or moderate pressure then they pass the test. If they are able to hold the test position with slight pressure or no added pressure, they receive a grade of fair. If no contractions are felt in the muscles and no visible movement is seen then they receive a zero (Laxer 366). Another test that can be performed is the Childhood Myositis Assessment Scale (CMAS). It is a 14 step performance balance test that can test the muscle strength, endurance, and physical function. The patients endurance is tested using time and seeing how long the patient can keep a raised leg off of the table for a certain period of time. Unfortunately, this test is extensive and can cause the patient to become more fatigued that normal (Laxer 367).
Another way that a patient can be diagnosed with through testing to blood to see if there are high levels of muscle enzymes such as aldolase of phosphocreatine kinase (Meneghini 155). Aldolase is an enzyme that helps to break down sugar into energy and it is found in the muscle tissue. Phosphocreatine kinase is found primarily in the heart, brain, and skeletal muscle. Through the blood work doctors are able to see the levels and proceed testing the patient or diagnosing them with JDM.
There are other symptoms of JDM that are less common but can happen in any patient. Calcinosis can affect up to one third of the children that have been diagnose with JDM. It is when they develop small lumps of calcium under the skin or in the muscle. It can feel like pebbles and can vary in size. In most cases the body naturally absorbs the calcium eventually. If the body does not, then the small bumps eventually make it to the surface of the skin and they can become infected. Vasculitis Ulcers are holes in the skin or gastrointestinal tract, when they occur in the skin they can look like open sores, and inside the body they can harm the digestive tract. Contractures are muscles that are shortened causing a joint to stay in a bent position. This can be from a calcinosis crossing over a joint (What is JM). Lipodystrophy is a loss of body fat. The fat cells become damaged in either specific parts of the body or all over the body. If the face is affected it can cause one to look “bony” and have sunken cheeks. Lipodystrophy is seen in approximately 10%-40% of patients who have JDM (Laxer, 369).
One prime example of a patient over coming JDM and leading a normal life is the story of Caroline Farley. She thought that her Christmas of 2013 would be like every other Christmas, but this was not the case. During Christmas break she developed a rash on the back of her hands and on her face and ears. She was visiting Chicago from North Carolina, and Caroline and her family thought that the reason why she had a rash was just dry skin. Also, one day she realized that her neck hurt her, but not thinking much about her pain, she just figured she slept on her neck in a different way causing her to become sore. When she went home to North Carolina and her rash persisted, Caroline’s parents decided to take her to the doctor. After seeing just a regular pediatrician, the doctors recommended that she go see a specialist for Juvenile Dermatomyositis at Children’s Memorial Hospital in Chicago. Mrs. Farley and Caroline met with Dr. Lauren Pachman. After running multiple tests, she was diagnosed with JDM. Caroline started taking medications including Prednisone, Methotrexate, and an ointment for her rash. Currently Caroline is coping with her illness in a positive way. “Sometimes I get tired easily, and I only go to a few classes at school at day. One time a boy at school asked me what happened to my hands and I told him that I hurt them going sky diving, he totally believed me” (Farley).
When someone is diagnosed with certain cancers it may have been because they smoked and were diagnosed with lung cancer. While with most illnesses it is known why people are diagnosed, unfortunately doctors and research do not what causes JDM. Since JDM is an autoimmune disease it could possibly be related to other autoimmune diseases. One reason why someone might get an illness is genetics, so if someone in the family has an autoimmune disease it is more likely for another person in the family to develop one. Caroline has a cousin who has an illness called Ulcerative Colitis, which is an autoimmune disease that affects the digestive system. Genetics is the only known reason why people get JDM or any autoimmune diseases, but hopefully with research it will soon be found what other causes there could be.
Dr. Lauren Pachman is one of few doctors who treat JDM in the United States, she works at Children’s Memorial Hospital, in Chicago, IL. Her and her team study JDM and they have found that genetics and environmental factors can be causes of why people are diagnosed with JDM and other autoimmune diseases. They are interested in the TNF-a-308 protein associated with the A allele in genetics. When someone is first being diagnosed they have found high levels of this. They study muscle biopsies to look for changes in DNA. “This intensive research effort broadens the clinical, genetic and immunological characterization of the child with JDM, which is a critical aid in guiding current therapy and may lead to novel targeted interventions.” Along with her research she continues to see patients who had JDM, including Caroline Farley (Lauren M. Pachman’s Research Interests).
The immune system is defined as part of the body that protects the body from infection. When it attacks itself this causes inflammation. During any autoimmune disease the immune system becomes overly active and it starts to attack itself. This occurs to be a problem because it attacks healthy tissue doing harm to the body instead of protecting it. The inflammation that is seen is found in the blood vessels under the skin and in the muscles. When the blood vessels in the skin become inflamed this causes a rash. It does not itch but it looks like dry skin and the can cause the skin to crack and bleed. Inflammation of the blood vessels in the muscles is more detrimental to the patients health. This is because the patient could lose all muscle function if not treated and in order to be treated one needs to be diagnosed with JDM first (What is JM).
JDM will not go away on its own and the only way for someone’s symptoms to subside is to take medications. One important medication is called Prednisone, it is a corticosteroid that is used to treat people who have low levels of corticosteroid levels. This means that their bodies do not produce enough steroids. Prednisone can be used to treat various illnesses including arthritis, multiple sclerosis, lupus, and other conditions affecting the lungs, eyes, skin, kidneys, and other organs. In JDM prednisone reduces swelling and alters how the immune system works. This medication can be taken as a tablet or a concentrated solution to take by mouth. It is important to eat food right before the patient takes the medicine. Patients should always take the medication everyday and they need to make sure not miss doses. This is important because if someone just stops taking it the body might not have enough natural steroids to properly function. This can cause symptoms including fatigue, upset stomach, weight loss, changes in skin color and mouth sores (Prednisone: MedlinePlus Drug Information).
A patient has to be weaned off of prednisone meaning that they cannot just stop taking it one day. Every day or every few days the amount of medication should be lowered. In some cases as a patient is being weaned off, their symptoms may come back and they doctor will raise the medication intake again. Although prednisone does help with the symptoms of JDM, there can also be some severe side effects. These include weight gain, mood swings, and if taken for a long period of time, growth stunting (Prednisone: MedlinePlus Drug Information). Caroline is currently taking prednisone and her reactions to the medication are what most people have said about it. “To be honest, I know the medicine is helping me, but it makes me so hungry all the time, and as I eat I gain weight, and it is not very fun. Although when I am hungry I try to eat healthy foods. I dance regularly so I suppose that is my exercise” (Farley).
Another medication used to treat JDM is Methotrexate. It can also be used to treat psoriasis, rheumatoid arthritis, and certain types of cancer. It is in a class of medications called antimetabolites, which is a chemical that inhibits the use of a metabolite. This plays a role in metabolism. It works to treat JDM because it decreases the activity of the immune system. This medication can be taken by mouth or as an injection. It is important for the patient to take the medication as directed by their doctor. Some patients have taken the medication daily instead of weekly and the results have been fatal. Some side effects of Methotrexate include: dizziness, drowsiness, headache, swollen, tender gums, decreased appetite, reddened of the eyes, and hair loss. While those are not serious side effects, some serious side effects include blurred vision or loss of vision, seizures, confusion and loss of consciousness (Methotrexate: MedlinePlus Drug Information).
In another case study a girl of the age of three has trouble walking and running and she had a fever. She was taken to multiple doctors and received an ointment, which is another medication used to treat the rash and she takes multi vitamins to help with her weakness. Unfortunately, eleven years later her symptoms not only persisted but also progressively got worse. Her rash spread to the back of her hands and on her fingers, the skin over her knuckles had grown to be thick. She had difficulty standing up from a sitting position and vice versa. After doing blood work, the doctors found that she had high levels or kinase and aldolase in her blood. Because the doctors did not diagnose her with JDM early, her symptoms worsened. If JDM is caught early enough then the patient can lead a normal life on medications to help suppress the symptoms (Ishaque).
Juvenile Dermatomyositis is an autoimmune disease that can cause a skin rash and weakened muscles. The origin of the illness is unknown but through research, it may be seen to come from genetics and environmental factors. There are a few ways that doctors and researchers can diagnose a patient, one being a strength test to see how much pressure the muscles can withstand and they can also look at the patients levels of aldolase and kinase in their blood. From the results the patient can then be put on medication to help with the symptoms. Some medications include Prednisone and Methotrexate. Although each drug does have its fair share of side effects, the good that it does to help the patient is better than the negative outcome. Even if a patient is on medication for JDM and their symptoms are gone, they will always have the illness. Hopefully in the future doctors and researches can find a cure for all autoimmune diseases!
Farley, Caroline. "Juvenile Dermatomyositis." Telephone interview. 7 Apr. 2014.
Ishaque, Sidra, et al. "Juvenile Dermatomyositis." 21.7 (2011): 434-436. . Web. 7 Apr. 2014.
Lauren M. Pachman’s Research Interests. Lurie Children's Hospital of Chicago Research Center, 2014. Web. 07 Apr. 2014.
Laxer, Ronald. Pediatric Clinic Pediatric Rheumatology. Philadelphia: Elsevier, 2012. 365-369. Print.
Meneghini Carlo. An Atlas of Pediatric Dermatology. Chicago: Year Book Medical Publishers. 1986. 153-156. Print.
“Methotrexate: MedlinePlus Drug Information." U.S National Library of Medicine. U.S. National Library of Medicine, n.d. Web. 07 Apr. 2014.
"Prednisone: MedlinePlus Drug Information." U.S National Library of Medicine. U.S. National Library of Medicine, n.d. Web. 07 Apr. 2014.
What Is JM? Cure JM Foundation, 2014. Web. 08 Apr. 2014.