May is Lupus Awareness Month, So is Every Month of the Year for Me

 

Lupus is an auto-immune disease. It makes the immune system mistakenly attack healthy cells including the organs and tissues. Lupus causes inflammation and damage that can affect the joints, skin, organs, and blood. It is a chronic illness and has no cure but there are effective treatments. This disease can often be difficult to diagnose or is misdiagnosed. Its signs and symptoms mimic many other diseases and illnesses. Lupus is a disease that can affect anyone but is more common in women between the ages of 15 and 44 and those of African-American ethnicity.

Types of Lupus

There are several types of lupus. Most common is SLE, systematic lupus erythematosus, which affects many parts of the body. Other types are:

  • Cutaneous causes rashes and lesions.
  • Drug-induced which is due to an over-reaction to medications. This usually stops when the medication is discontinued.
  • Neonatal which is due to when an infant acquires auto-antibodies from its mother with SLE.

Cause

The exact cause for lupus is unknown. A risk factor in lupus may be genetics which are thought to play an important role in the disease. Genes alone don’t determine who has lupus, many factors trigger the disease. Genetics, environmental factors, viruses, and infections can all play a role in the cause of the disease.

Risks

Lupus causes risks of cardiovascular disease, kidney disease, stroke, heart issues, endocarditis, kidney damage, and seizures. It is a disease that is very difficult to diagnose and can take even years before getting an official diagnosis.

Criteria

Diagnosises are made with medical history, physical exams, blood tests, and biopsies. A diagnosis of lupus in based on eleven criteria used to assess and diagnose the disease. It is diagnosed when at least four of these criteria are present. Those criteria are:

  • Malar rash
  • Skin rash
  • Photosensitivity
  • Mouth or nose ulcers
  • Nonerosive arthritis
  • Cardio-pulmonary involvement
  • Neurologic disorder
  • Kidney disorder
  • Blood disorder
  • Immunological disorder
  • Antinuclear antibodies

Signs

Malar rash is a red, butterfly shaped rash across the cheeks and nose. Skin rashes can be raised or red patches. Photosensitivity is a strong reaction to sun light causing a rash or flare. Mouth or nose ulcers are usually painless. Nonerosive arthritis is inflammation in two or more joints. Cardio-pulmonary involvement is inflammation of the heart lining and/or lungs. Neurologic disorders are seizures and/or psychosis. Increased protein or clumps of red cells in the urine are caused by kidney disorder. Anemia caused by damaged red cells, low white cells, or platelet counts are blood disorders. Immunological disorder is when the immune system attacks healthy cells. A positive blood test not induced by drugs are antinuclear antibodies.

Symptoms

It can cause pain, fatigue, swelling in the joints, rashes, photosensitivity, and fevers. Disease activity, anxiety disorders, sleep disturbances, vitamin D deficiency, and low exercise can all cause fatigue from lupus. Rashes can be itchy and painful and appear on the face, ears, arms, shoulders, chest, hands, and other areas exposed to the sun. Arthritis due to lupus causes pain and swelling in the joints, as well as stiffness, achiness, and tenderness.

Other Health Risks

Lupus can cause many health risks including issues with pregnancy, heart disease, kidney problems, diabetes, lung problems, spinal cord inflammation, blood vessel inflammation, antiphospholipid syndrome, and neurological dysfunction.

Diagnosis

Diagnosing lupus can cause a patient to see many different doctors to treat the symptoms. They can include:

  • Rheumatologist-deals with arthritis and diseases that cause swelling joints
  • Immunologist-treats immune system disorders
  • Nephrologist-treats kidney disease
  • Hematologist-treats blood disorders
  • Dermatologist-treats skin diseases
  • Neurologist-deals with the nervous system
  • Cardiologist-deals with heart and blood vessel problems
  • Endocrinologist-deals with glands and hormones

Treatment

Treatment of lupus generally aims to prevent and/or treat flares, prevent and/or reduce organ and joint damage, reduce swelling and pain, help the immune system, and balance hormones. Options for treatment include NSAIDs, antimalarials, corticosteroids, immunosuppressives, BLyS-specific inhibitors, and other related medications to treat specific issues. Those issues are things like high blood pressure, high cholesterol, or infections.

Prognosis

Lupus has no cure. There is progress in identifying people at risk and finding molecular markers. The hope is to generate early intervention and disease-prevention strategies. Designing new clinical trials and combining them with existing therapies is a big focus for research.

My Story

The Beginning

I had just turned 15 when I was diagnosed with lupus. It started as severe flu-like symptoms and then progressed with swollen and painful joints. The type of lupus I was diagnosed with is the most common, SLE. In my case it affects my joints, skin, and blood. It is thought that my lupus is partially genetic because my paternal grandmother also has lupus. But there are also factors pointing to the many viruses and chronic sinus infections I endured in my childhood as well as too much sun exposure that could have also contributed to my illness.

Diagnosis

My diagnosis took several months which is actually a quick diagnosis. The illness presented with 10 of the 11 criteria for diagnosis so it was unmistakable as lupus.

Parts of my body that are exposed to the sun often get rashes, including the butterfly rash on my face. I am extremely sensitive to the sun and too much exposure can cause more rashes and even a flare up of the disease. There are constantly ulcers in my nose and mouth. My arthritis affects almost all of my joints, but the worst are usually my hands and knees. I have pleurisy which is an inflammation in the lung lining that causes pain when breathing deeply. My kidneys produce excess protein in the urine and sometimes even spill red blood cells. I am severely anemic and usually have low blood counts. My immune system is constantly attacking anything and everything in my body. Blood tests always show a positive ANA test.

Symptoms

I deal with almost every symptom that lupus can cause. Pain, fatigue, joint swelling, rashes, photosensitivity, anxiety, sleep issues, vitamin deficiencies, stiffness, achiness, and tenderness. These are almost always a common thing for me every day.

Due to my lupus I have had pregnancy complications such as miscarriage, early delivery, difficult deliveries, high blood pressure, gestational diabetes, and blood clotting. I have a functional heart murmur which is genetic but also could be part of the lupus. My kidneys have to constantly be monitored to make sure they continue to function properly, and I have to get monthly blood tests to make sure my blood counts stay relatively normal. I developed APS with my lupus which has caused blood clots and miscarriage. Anxiety, stress, and depression are a part of daily life as well.

Doctors

Currently I see a family physician who is secondary to my rheumatologist. He helps in aiding my rheumatologist when I am unable to make the long trip to see her. She is also an immunologist. I also have a nephrologist, dermatologist, neurologist, and endocrinologist that I can see if needed.

Medications

Currently I am on a lot of medications, vitamins, and supplements…23 to be exact. I take these to help my flares, reduce damage as well as swelling and pain, help my immunity, and to supplement what vitamins and minerals my body is lacking.

Wrap Up

Living with this disease is extremely hard on the body, physically and mentally. Flooding the body with medications just to attempt to stay somewhat healthy is no fun. There are many possible side effects that can occur due to these medications. These can be worse to deal with than the symptoms from the disease itself. Constant pain, fatigue, and sleeplessness wreak havoc on a person and can end up causing depression. Every case of lupus is different, no two are alike. Therefore, it is a very difficult disease to diagnose and effectively treat.

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