Raising awareness :Lupus Awareness month…Does that even exist?

August in fact is not Lupus awareness month, and not even one of the 12 months of the year is either. I believe in fact there should be a month or at least a day to recognize people with lupus. I decided to go and look up awareness ribbons and found something rather deja vu. I figured there was not going to be a ribbon for Lupus. So I researched thinking I would not find a ribbon for Lupus. Purple was my mom’s favorite color, and to my surprise there is a purple ribbon for Lupus. I have postponed this post and decided to do it now for very important reasons. August 25 will be the anniversary of my mom’s death. This day will be hard so I chose to post the blog early.

The best way to raise awareness is to speak out and inform people. The more people that know about diseases, the world, and a wide variety of subjects, the better chance they have of understanding. Knowledge really is power. I have tried my best to inform people of this disease in my first post : http://www.progressiveu.org/032913-lupus-uncureable-wait-what
Many people read this post which was my mission, but not as many as I wanted. Also in that post my writing skills were not as developed as they are now. I never thought a person could improve their writing.

Lupus in many ways is comparable to Cancer and AIDS. This disease mimics other diseases so well, that it makes it very had to diagnosis most times. AIDS lowers your white blood cell count as does Lupus. Most of us know this makes a person more prone to sickness because our white blood cells are like an army that fights illness. The less white blood cells you have the harder it is to fight off even the smallest illness. Cancer makes your hair fall out (the medicine only makes it worse) and it is the same with Lupus. The main difference is Lupus is not well known and less understood than both AIDS and Cancer. Many fall victim to Lupus, and when they do they enter a hellish nightmare that could last a lifetime. 1.5 million Americans suffer from Lupus. Lupus is also listed on the “disability list“.

The two most common forms of Lupus affect a person differently. All together there are four kinds of Lupus, but two are the most common and the only ones I have ever heard of people having. Discoid Lupus is the first kind I will talk about. It ONLY affects the skin. You receive rashes that can appear on various places on your body. Your neck, scalp, face, chest, back and legs. The rash is normally at all of these places at one time. You appear as though an angry mob of mosquitoes just attacked your entire body. Getting a simple biopsy at your dermatologist is essential to the diagnosis of discoid lupus.

Discoid Lupus can turn into (the bad kind) Systemic Lupus, but only 10 percent of Discoid lupus sufferers (only topical Lupus) can turn into Systemic lupus. My mom was one of the unlucky 10 percent. Systemic Lupus in my opinion is the worst form of Lupus. This kind of Lupus goes further to ruin your life. Besides red rashes on your skin, it attacks your joints and some or all organ systems in your body. You can then start to see sores in a person’s mouth, their hands lock up, it is very hard to move and even get up out of bed. Celebrex is an arthritis medicine, but helps Lupus patients as well by slowing down the progression of joint damage.

The best way to diagnosis Systemic Lupus is by a simple blood test. The test is called ANA blood test. I am happy to report I took one and mine came back negative. I will continue to get them each year. It is very important for anyone (to be honest) to get this blood test as a precaution. It is always better to be safe than sorry. It is also very important if a family member has had Lupus such as; your mother, grandmother, and father to get tested. The disease is heredity, although it is prevalent in woman, there has been a few documented cases of males getting lupus. ( 90 percent of Lupus victims are female)

People who have both Discoid and Systemic lupus have “ flare ups”. They could have no rashes for weeks on end then randomly one day the rash will come back despite the medicine. “Flare ups” can be brought on by stress, sunlight, and also for no reason at all. This often led’s the person suffering depressed, helpless, and angry. Battling this disease is one of the toughest things a person must do and those suffering are presumed as weak, when they are actually the strongest people of them all.

Although there is no cure for Lupus (much like AIDS) we have drugs to control the symptoms. The drugs do more harm sometimes though. A steroid is given to clear up the Lupus. Normally prednisone. This makes a person very hyper, thirsty, very very hungry, it makes their hair fall out, gives you mood swings, can take awhile to work.

Many people in the last post asked me : “Is there any other way to deal with it without taking 10 medications a day?” Well yes and no. You can change your diet to help with the weight gain from the prednisone and it may help some symptoms, but what works for one person doesn‘t always work for another. People with mild cases of Discoid Lupus don’t need as much care as people who has moderate cases of Discoid or people who have systemic.

“Prednisone is out for blood.” Extended use of this drug has lead to missing vertebrae in the spine resulting in back surgeries and numerous other problems. Since this drug makes you so hyper a person finds it hard to sleep at night so Xanax or other sedatives are prescribed. It levels a person out, but most the time they still have a hard time getting tired. This of course is just one of the 10 or more medications a Lupus sufferer is prescribed.

Hopefully a cure is in the future for Lupus, but until then the waiting game must contuine. Lupus doesn’t only affect the patient who has it, but also the family members who have to care for them and watch them in agonizing pain.

This post is dedicated to Jean A. Harper Parker September 1, 1958-August 25, 2006. I hope you learned something. Here are some links about lupus including the Lupus Foundation of America. Feel free to PM me if you have any questions. J

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutintrod...

http://www.4woman.gov/FAQ/lupus.htm

http://lupus.webmd.com/guide/lupus-symptoms-types

http://lupus.about.com/od/typesoflupus/Types_of_Lupus.htm

Stay tuned for my next blog about Awareness!!!