Lupus, A Silent Disease
She wakes up early and sits up in bed. The pain is so excruciating that she immediately reaches for her basket of medication. She hasn't even put her feet on the floor and she has to take medicine. She musters up enough strength to get out of bed and go to the kitchen for breakfast. Walking to the kitchen is a big task for her. Most of us take that for granted. We just get up and go. She has to hold on to the walls as she walks and use all of her strength to put one foot in front of the other. She finishes breakfast to only go immediately to the bathroom with an upset stomach from it. Back to the bed she goes to sit down and catch her breath. She stays in the bed most of the day with very little adult interaction other than through social media websites and telephone calls. She doesn't have the strength to go anywhere and when she does she uses her wheel chair to get around. The highlight of her day is her little granddaughter who comes into her room smiling and chatting away. She gathers enough strength to play with her for a little while before she lays down on the bed again to rest. She suffers from depression and anxiety because her life is so different from what it was 10 years ago. On the outside she is a beautiful middle aged woman with the face of a porcelain doll. On the inside she is in so much pain and suffers silently as everyone around her goes about their everyday business. She went from working a job every day and being so full of life; a social butterfly. To living within the four walls of her bedroom every day. This is not so much her choice. It is something that she can not help. She is my best friend and she has Systemic Lupus.
What Is Systemic Lupus?
Systemic Lupus is an auto-immune disease that can affect any part of the body. It can affect anyone at anytime in their life. It is more common in women between the ages of 15-35 years of age. There is no cure for Systemic Lupus. Causes are unknown but are believed to be related to genetics and environmental factors. It is very hard to diagnose and a person can suffer for years before being diagnosed.
Lupus is very unpredictable. A person suffering with Lupus will have periods of feeling good or remission and then have what is called a flare up. It can cause fever, joint pain, and fatigue. Another very common symptom is a butterfly rash on the face across the nose. Headaches are also very common. Sunlight can cause symptoms to be worse. Because of this, many sufferers go long periods of staying in the house to avoid sunlight. This can cause depression in many people. Lupus can affect the joints, heart, lungs, kidneys and blood cells. The most common cause of death associated with Lupus is kidney failure.
How Is Lupus Treated?
In the 1950's the prognosis was not good for Lupus. The expected life span was 5 years after diagnosis. Today a person can expect to live a normal life span with the right treatment plan and good communication with their doctor. It is treated by preventing flare ups or reducing their severity and duration when they happen. The three most common forms of medications for treatment are:
Non steroidal drugs (NSAIDs) – such as Aspirin, Advil, Ibuprofen, Aleve
Antimalarial drugs – such Plaquenil. There is no connection between Malaria and Lupus but the same drugs have shown to be effective in the treatment of the symptoms of Lupus.
Corticosteroids – for inflammation.
Many sufferers are also on some form of anti-anxiety or anti-depressant to keep their anxiety and depression symptoms under control.
I have witnessed my friend suffer in silence from this terrible disease for years. I have seen her go from a very active woman to just sitting in the house most of the time. The birth of her granddaughter has given her the strength to do so many more things than she used to do. But it really takes its toll on her. She has good days but usually pays for it with a few bad days that require bed rest and lots of medication. If you know someone with Lupus, please be there for them. Call them, go see them, or just understand where they are coming from. From the outside she looks like a normal woman that could do anything. It is very deceptive. She suffers everyday and most of us don't know just how much. Participate in walks or donate to the Lupus Foundation to help in the fight for a cure for this horrible disease.
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