One Patient's Positive Perspectives

Put on purple!

This month is a very special month in the lupus community, and a great month to pull out all of your purple clothes, jewelry, shoes, handbags, scarfs, hair bands, socks, nail polish, eyeshadow, lipstick, gel pens and notebooks. It would be a great month to decorate a house , office, apartment or car with purple spring decor items!  I am even looking for purple candy for the candy dish on my desk at work.   I plan to share and wear my purple everywhere, everyday in May!

Band Together for Lupus Awareness

The whole month of May is Lupus Awareness Month, May 10th will be World Lupus Day, and May 18th will be the day to POP for lupus awareness. The Lupus Foundation of America (LFA) campaign to encourage everyone to POP, or Put On Purple, on May 18th will help promote lupus awareness.  The LFA is also encouraging everyone in the lupus community to “Band together for Lupus Awareness.”

Many community billboards, web sites and other displays all over our country will be showing their purple colors in displays such as special building and fountain lighting colors joining with the LFA’s POP efforts to publicize lupus.

Here, we will be sharing a different Lupus fact each day, and talking about many Lupus Awareness activities and opportunities all month-long.

LUPUS FACT OF THE DAY No. 1

Lupus is an unpredictable and complex autoimmune disease that causes inflammation and can damage any organ in the body with life-threatening consequences. Signs and symptoms of lupus attack on various body symptoms are important to find and seek treatment for while they are active. From time to time lupus can attack nearly any system of a patient’s body.

Unpredictable Lupus!

My rheumatologist has said “the only predictable thing about lupus is that it is unpredictable.”  Sometimes for weeks, months or even years on end, lupus is quiet and has seemingly little effect on my health.  Then, without warning, lupus can flare quickly and cause profound changes in my health and quality of life.  Medications may need to be adjusted, lifestyle and work schedules changed, responsibilities and commitments rethought to respond to moderate and severe lupus flares.

One night a lupus patient may go to bed feeling great, yet in their next waking moment the following morning, they may face a  severe morning flare of arthritis, CNS confusion and cognitive impairment and overwhelming fatigue and malaise.  The next morning, a patient may wake up feeling wonderful, and other days may be somewhere between the extremes.  A lupus patient and their doctor need to be ready to respond to the changing face of the disease, to manage lupus and reduce the disruptive and harmful impacts it can have on a patient’s life.

Unpredictable ...

The complexity of lupus makes it difficult to diagnose and difficult to treat.  It is sometimes difficult to distinguish from autoimmune and other illnesses that attack a single body system, and some of these such as multiple sclerosis have similar symptoms, but require very different treatment and medications than lupus.  Some of the powerful drugs that are used to treat lupus, such as cancer chemotherapy drugs, transplant anti-rejection medications and various forms of steroids have significant side effects and risks.  There is no one standard treatment for lupus, because there is no standard set of symptoms common to all lupus patients.  Each patient is unique, and from time to time each patient’s lupus changes and requires different treatment approaches.

Lupus Causes Inflammation

Lupus causes inflammation in connective tissue by attacking the cells and causing premature cell death, or apoptosis.   A healthy body normally has to dispose of a certain amount of cellular debris from the components of cells that die in the normal course of the body’s tissue renewal, as old cells die and new ones are created that replace them in our living tissues.  However, with lupus, the number of cells that are dying is much greater, and the amount of cellular debris is greatly increased, causing a strain on the body’s systems that must filter and dispose of the spare cell parts.  The extra materials can accumulate in the affected tissues, causing inflammation.  The body also has to work harder to try to repair the damaged tissues and this affects the function and condition of the organs and other tissue where lupus damage has occurred.

... Lupus

Lupus Can Damage Any Body Organ

Lupus can attack nearly any organ.  My lupus has attacked my lungs, liver, central nervous system, peripheral nervous system, digestive system/colon, joints, tendons, skin, mouth & nasal mucous membranes.  There is hardly a system that cannot be a target of lupus.  A lupus patient needs to be aware and alert to changes that might signal a new and different set of symptoms.  It is critical to keep medical appointments that include regular lab work.  Sometimes the blood and other tests give the first signs of changes in lupus and may signal a new area of lupus activity of impending flare, even before visible symptoms can be detected.

Lupus Organ Damage Can Be Life-Threatening

Unchecked, lupus attacking the kidneys, liver, brain, heart, intestinal tract or vascular system can become life-threatening when one of these vital organs fails.  Lupus in one of the major causes of kidney failure, and nearly 50% of all lupus patients have some form of kidney involvement.  I have personally known other patients who lost their lupus battle because of its unabated attack on one or more of these organs.

It’s Best to Identify Lupus Symptoms When They Are Active

Although we can tell our doctors about our lupus symptoms after they have cleared up, it is harder for a doctor to respond to a report of symptoms he has not observed.  Lab tests done during a time of lupus symptom flare are more likely to give results that indicate the causes and severity of the lupus activity.  This helps your physician to have better first hand knowledge of your lupus.  If  a patient is still in the “wait and see” period of their doctor trying to find out if they do have lupus, it is even more critical doctors see the symptoms for themselves.

What can you do to help spread the word about unpredictable Lupus?

Advertisements

Your Comments Are Welcome!

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: