"The Disease of a 1000 Faces” May Is Lupus Awareness Month

Original post-Jan 13-2014 




Hello all let's welcome  May with some knowledge. Last year I was asked to write about Lupus. The request came from a friend in Jamaica. Lupus has  become a disease that is affecting  individuals in our  own community more often than you know.  May is  Lupus awareness Month and like all illnesses, I will continue to share information and encourage awareness and support for those living with Lupus and other health issues. 


 No one knows for sure what is the cause of lupus, but  What we do know is that, in lupus, the immune system (the body’s defense against viruses and bacteria) is unable to tell the difference between intruders and the body’s own tissues. Trying to do its job, it attacks parts of the body, causing inflammation and creating the symptoms of lupus.Until science fully understands how the immune system works, the specific cause of lupus remains unknown. As your advocate is is very important for you to understand the necessity surrounding explaining your symptoms properly to your Doctor. Persistence is the key when navigating the health care system. It can change your health care outcomes significantly.  Symptoms are the only signs that Doctors have to work off of when trying to treat you or diagnose you. One of the common issues that I find is people trying to do it on their own.  Often I will hear, " I looked up  the information up on the internet" or "I'm going to see someone in alternative medicine like a naturopath" or even I will often here "oh my Friend told me" let's not forget the ever famous "I'll keep praying" but there is no  greater disesase than lack of Knowledge.   Lupus  symptoms vary from person to person and can include fatigue, joint pain, swelling, rashes, and fever. And since no two cases present exactly alike, lupus is notoriously misdiagnosed as rheumatoid arthritis, a virus, or something else. The condition can harm the skin, kidneys, heart, nervous system, blood cells, for this reason it is dubbed  "The Disease of a 1000 Faces.” 


Despite being a disease doctors often miss lupus  this is actually quite common.  According to  Health.com About 1.5 million people in the United States have it and it is estimated  that it affects over 1:1000 Canadians. The use of an  health care advocate can help you through any journey that involves  tackling the health care system. 

With lupus attaching itself to many ethic groups I just wanted to let you know that you are not alone.  I myself used to think  that Lupus was  not a "Black Disease"  until I learned, that Rapper Trick Daddy and many other celebrities  suffer from Lupus.
“I went to the doctor like 12 years ago. He took all kinds of tests, because I was trying to get rid of what we call dry skin,” said Trick. “She did biopsies and blood tests and swab tests. She told me I have lupus. I am allergic highly to the sun, that’s my worst enemy. It’s like an AK-47 with a double clip on it. I could jeopardize kidney and liver failure from the treatment and the medication.” Trick daddy


Lupus is not contagious and is not related to AIDS or cancer. It belongs in the family of diseases that includes rheumatoid arthritis, multiple sclerosis, juvenile diabetes, and scleroderma. The most common type of lupus is SLE (systemic lupus erythematosus). It is a complex and baffling condition that can target any tissue or organ of the body.  There are other types of lupus which mainly affect the skin, Discoid lupus typically causes sores on the face and scalp but can affect the skin anywhere on the body. It can also cause hair loss. People with discoid lupus are often sensitive to ultraviolet light.  Discoid lupus erythematosus lesion is seen  on the face of musician Seal   A few individuals develop drug-induced lupus as a response to some medications used to treat other conditions. These symptoms disappear when the person stops taking the medication.






 Anyone can: women, men, children. Between the ages 15 and 45, eight times more women than men get lupus. In those under 15 and over 45, both sexes are affected equally.











When veteran rapper Snoop Dogg’s then 11-year-old daughter Cori was diagnosed with Lupus nearly 4 years ago, he and his wife, Shante Broadus, had never heard of the fatal disease that affects more than 1.5 million people.
“Shante and I cried 1,000 times” Snoop told People Magazine.
 "She's the toughest little thing I've ever met," the rapper says of his daughter. "She's on the honor roll, playing volleyball and softball, living life. She has all this joy. In the beginning, lupus was winning. But now Cori is."    They say 




Women of color are two to three times more likely to develop lupus than Caucasians. For the treatment to be successful, it is important that the treatment should be started early in the disease. Early diagnosis is essential. 



DID YOU KNOW?
“Hispanics are two to three times more likely to be diagnosed with Lupus, Hispanic women tend to develop symptoms at a much earlier age compared to other women. Recently, singer Selena Gomez made headlines when it was rumored she delayed tour events due to a flare-up of the condition.

“Selena has been going full throttle the past few years and her Lupus is really catching up with her right now,” a source told Popdust. “She knows that she needs to take some time to address the disease and look after herself better if she wants to live a full and healthy life.”


Gomez, who is 21-years-old, has been living with lupus since her late teens

Patients with Lupus should eat a diet low in sugars and carbohydrates, low in fat, high in fibre and with moderate amounts of protein. Patients who reduce their intake of red or white meat (including chicken) in favour of fish and plant proteins do better. Abundant Omega-3 supplements are advisable, 3,000mg being the minimum. Smoking is an absolute no. Exercise is encouraged for various reasons. Apart from the beneficial effects on the cardio-vascular system, it also counteracts the insomnia many Lupus patients  often suffer from.









Entertainer and TV personality Nick Cannon announced in 2012 that he has lupus.  Since then, he has chronicled his battle against lupus through his online videos, in the media and at personal appearances.  Nick served as the Grand Marshal for the Lupus Foundation of America's Washington, DC Walk to End Lupus Now event on April 19, 2014, and after participating in the walk, along with 4,000 other people, he sat down for a brief interview to discuss how he is living with lupus.






Such power full Words by Jalesa in Pride News Magazine   Find the full interview below

Pride News Magazine: What would you like to see happen? 
Jalesa Martin: In regards to Lupus awareness, I would definitely love to see more people learning about Lupus, not just as a disease, but also about the immense effects that it has on the body. When I tell people that I have lupus, I get one of two answers: “What is that?” or “But you don’t look sick!” One thing I would love for people to be informed about is that, Lupus is an invisible illness that does not always have external effects on the body.
Although we don’t look sick, many things are going on inside our bodies and causing us pain internally. I would also love for new treatments to be developed which have less long-term side effects on people with Lupus.




Marcia Boodie  on Instagram Supporting The Lupus walk for  Tashana last year 

                       Nick Canon says "Lupus Does Not have ME"




 Since lupus has many symptoms that requires  the use of many specialists, As your Health care advocate I  am available to help  support your journey.  Advocacy for your health care needs is the  mission of JA Nursing We Care Inc.  Your Knowledge about your illness, and the literacy needed to understand your symptoms is  vital to receiving the best care.


JA Nursing tip of the week always document your visits, carry an expert patient book (coming soon by JA Nursing Services) but until then get a  notebook and write everything down. All illnesses require you to be the most important member of your health Care Team



Join the growing number of individuals, communities, media and celebrities that Put on Purple™ for lupus awareness and tell people why. Getting your purple on is an easy way you can help the Lupus Foundation of America raise awareness of lupus and show support for those who are living with the disease.

SAVE THE DATE: Put On Purple on May 20, 2016






 Additional links


http://www.lupuscanada.org/lupus-questions/

 http://www.lupusontario.org/
   
http://www.huffingtonpost.com/2015/05/14/toni-braxton-lupus-_n_7279258.html

 Find Lupus Ontario  on Facebook

https://www.facebook.com/pages/Lupus-Ontario/421580564611374


 http://www.niams.nih.gov/health_info/lupus/lupus_ff.asp




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