QUICK FACT 15

Systemic lupus is the most common type of lupus. Systemic lupus can affect any organ system of the body, including the heart, kidneys, lungs, blood, joints, and skin.

Common Medications Used to Treat Lupus

• Nonsteroidal anti-inflammatory drugs. Aspirin or other nonsteroidal anti-inflammatory drugs (NSAIDs), such as naproxen sodium (Aleve) and ibuprofen (Advil, Motrin, others), may be used to treat a variety of signs and symptoms associated with lupus. NSAIDs are available over-the-counter, or stronger versions can be prescribed by your doctor. Check with your doctor before taking over-the-counter NSAIDs because some have been associated with serious side effects in people with lupus. Side effects of NSAIDs include stomach bleeding, kidney problems and an increased risk of heart problems.
• Antimalarial drugs. Although there's no known relationship between lupus and malaria, these medications have proved useful in treating signs and symptoms of lupus. Antimalarials may also prevent flares of the disease. Hydroxychloroquine (Plaquenil) is the most commonly prescribed antimalarial. Side effects of antimalarial drugs include vision problems and muscle weakness.
• Corticosteroids. These drugs counter the inflammation of lupus, but can have serious long-term side effects, including weight gain, easy bruising, thinning bones (osteoporosis), high blood pressure, diabetes and increased risk of infection. The risk of side effects increases with higher doses and longer term therapy. To help reduce these risks, your doctor will try to find the lowest dose that controls your symptoms and prescribe corticosteroids for the shortest possible time. Taking the drug every other day also can help reduce side effects. Corticosteroids are sometimes combined with another medication to help reduce the dose, and therefore the toxicity, of both drugs. Taking calcium and vitamin D supplements while using corticosteroids can reduce the risk of osteoporosis.

Retrieved from Mayoclinic.com

September Awareness

This month is:
❂ Childhood Cancer Month
❂ Fruits and Veggies - More Matters Month
❂ Leukemia and Lymphoma Awareness Month
❂ National Sickle Cell Month
❂ National Infant Mortality Awareness Month
❂ National Cholesterol Education Month
❂ National Yoga Awareness Month
❂ National Ovarian and Prostate Cancer Awareness Month
❂ Reye's Syndrome Awareness Month
❂ National Rehabilitation Awareness Week (19-25)
❂ World Alzheimer's Day (21)
❂ Family Health and Fitness Day USA (25)
❂ National Women's Health and Fitness Day (29)
❂ World Heart Day (30)


Stay aware of what is going on and educate yourself!!  

Triggers For Lupus Flare

Things that can trigger a lupus flare

• Working too hard and not getting enough sleep.
• Being stressed.
• Being out in the sunlight, or exposure to certain halogen or fluorescent light bulbs.
• Having an infection or injury.
• Not taking your lupus medication.
• Taking certain medicines.

Biomarkers may predict, and corticosteroids prevent, severe lupus flares.(LUPUS NEWS)(Clinical report): An article from: Dermatology Nursing

Selena trial: hormone therapy tied to mild lupus flares.(Clinical Rounds): An article from: Internal Medicine News

Blood test soon may help diagnose, monitor systemic lupus erythematosus. (May Detect Flares Early).: An article from: Family Practice News

Novel immunomodulator cuts lupus-related renal flares.(Rx): An article from: Internal Medicine News

QUICK FACT 14

♔ Only ten percent of people with lupus will have a close relative who already has lupus or may develop lupus. Some people with lupus also will have a relative who has lupus or another autoimmune disease.

July & August Awareness

July is:
回 Juvenile Arthritis Awareness Month
回 UV Safety Month
回 Cord Blood Awareness Month
回 International Group B Strep Awareness Month


August is:
☄ Cataract Awareness Month
☄ Children's Eye Health and Safety Month
☄ National Immunization Awareness Month
☄ Psoriasis Awareness Month
☄ Spinal Muscular Atrophy Awareness Month

Travel and Illness

     I love to travel. As I mentioned before, I spent 5 months in Paris and traveled to six other European countries while there.  These countries were Italy, Spain, Switzerland, Belgium, The UK and Germany.  I have also visited Canada and Mexico, as well as many states in the United States.  I love to venture to new places to do and see as much as I can. 
     Having Lupus can put somewhat of a strain on our enjoyment and ability to travel.  Lucky for us there are ways to prevent and minimize difficulties while travelling, as well as alternatives to traditional vacationing.  Airports can be very overwhelming for someone who has physical limitations and/or illness. There are several services that airports offer in which you can take advantage.  These include wheelchairs, attendants to carry luggage, motorized transporters and so on.  Do not hesitate to ask for help if you are in pain or just not feeling well.  There are also options to print your boarding pass and check-in online ahead of time in order to avoid long lines. Also, if you plan ahead, you can request a seat that has extra leg room.  If you need assistance in the airport, ask, do not feel ashamed.  
     When travelling it is very important to take some precautions.  Make sure you have your medication.  Be sure to keep your pills in their original bottles when travelling.  Also, be sure to take a prescription order or more than enough to last through the entire trip.  Be sure to keep a couple of days worth of medication on your person, because luggage can get lost.  Besides having your medication, you should also plan accordingly.  Do not overextend yourself.  Plan rest and adequate sleep into your days.  Scheduling too many things in one day is a sure way to wear yourself down or even worst.  Be sure to stretch and keep the circulation going when travelling far distances.  Most importantly, if you begin to feel tired, pain or illness rest or seek medical attention.  Pay attention to your body and give it what it needs.  

     If taking a long plane or car ride, or a 6 day vacation seems to be to much for you there are alternatives.  You can take a cruise, which allows you to rest when necessary and their is access to everything you need 24/7, even medical assistance.  You could also take a short car ride or a day trip to a near by location.  There are many things that you can do to get away from the norm without putting yourself at risk for flare up.  Even though travelling is great, feeling well is even better.  Plan ahead and ask for help if needed.  And remember to send me pictures when you get back!! :0)


With Love,

Shining Bright for Lupus!

     Advocating for Lupus has been a pleasure for me.  Talking to lupus survivors, giving advice, lifting spirits and educating the public feels right to me.  I believe that having lupus has pushed me to do what I am supposed to do .  Though it is a terrible illness, I can now see it as a blessing.  It has brought me to find my passion.  I have always wanted to help, volunteer and have a career that assists the community, but I didn't know exactly know what I wanted to do.  Whether it was help children, work for a nonprofit, join the peace corps, etc.  Now I see that I am supposed to be helping my fellow lupies.  I noticed that when it comes to lupus awareness and helping lupus survivors I will push myself to do what needs to be done.
     When my boyfriend mentioned starting a lupus blog, I ran with it. Even though I am not the best writer and it is not my favorite thing to do; I love writing about lupus and sharing information with those whom are interested.  I just felt like I needed to do more.  He saw how fulfilled I was doing the blog and networking with people, so he mentioned starting a nonprofit.  I had thought about it, but i thought it was above my abilities at this point.  But when he said it, I ran with it.  So I have started Lupus Star Foundation.  We will provide support and services for lupus patients and their families, and eventually I would like to have a wellness center.  The wellness center is our future goal.  But for now, I would like to do whatever I can to assist my lupus butterflies.  

     We have already made it through our first event.  It was very successful!  I had a great time and didn't mind sitting in the heat for 9 hours a day.  I must really love you guys lol.  We had a booth at a fair here in Ypsilanti, MI.  We educated the passers by, collected donations, did face painting for donations, and sold handmade jewelry to raise money.  We still have beautiful bracelets and necklaces if your interested.  

  



     Our focus now is to raise funds in order to start doing events and offering services to lupus patients, as well as spreading awareness.  Some of the services we plan to offer are support groups, wellness days (massages, facials, etc.), emergency financial assistance, seminars, webinars, and many more.  I would like all of you to join the Lupus Star Foundation Website and spread the word.  There are forums there that I would like you all to participate in.  We want our website to become the place where lupus survivors and supporters go to share information, get advice and support, and meet each other.  You are the ones that need to start it off.  I need your support, so help me out guys.  You are my Stars!!  
     If you have any advice or resources that can help me and LSF become more successful please let me know, I would really appreciate it.  And if you know someone that would like to donate to our efforts, it can be done on the left side of the blog through paypal, or by mailing a check or money order (address is on the website).  Thanks guys!! 

QUICK FACT 13

✔ In approximately 10 percent of all lupus cases, individuals will have symptoms and signs of more than one connective tissue disease. A physician may use the term "overlap syndrome" or "mixed connective tissue disease" to describe this condition.

I didn't know she had lupus!!

Pietra Dawn Thornton, former wife of Billy Bob Thornton has lupus SLE.  She was a model for years, but gave it up after doing Playboy in January 1998. She decided that playboy/modelling was not what she wanted to do with her life.  She is a very talented writer, and has been since she was a child. Her creativity has stemmed from childhood as well. She has been struggling with Lupus for about 8+ years, but she still manages to live her life to the fullest.  Raising two boys while fighting lupus is difficult, but she gets it done.  She is a very strong and beautiful woman. We are proud of you Pietra, keep up the good work!!

QUICK FACT 12

♂ "There are significant differences in the way men and women might react to the diagnosis of SLE. Men might have the misconception that lupus is a "women's disease" and therefore a man with SLE is less masculine than a man who does not have SLE. This is simply not true. The roles and expectations of males and females in today's society are changing, but acceptance of these changes takes a long time. These types of stresses, coupled with the fact that lupus is mistakenly referred to as a "woman's illness," can make it difficult for males to cope with this chronic disease." 
Information retrieved from LFA- Men and Lupus 
   

Men's Health and Lupus

10 Foods to Boost Men's Health 

~ Oysters   (high in zinc)

~ Bananas   (high in potassium)

~ Fatty Fish   (high in Omega 3 fatty acids)

~ Broccoli  (heart disease and cancer preventing nutrients)

~ Brazil Nuts   (high in magnesium and selenium) 

~ Whole Grains   (high in fiber and Vitamin B)

~ Plant Stanols   (lower blood cholesterol levels)

~ Soybeans   (high in isoflavones) 

~ Berries and Cherries   (high in anthocyanin) 

~ Red-Orange Vegetables  (high in vitamin C and beta-carotene)

This week is National Men's Health Week, well depending on the source it is National Men's Health Month. This is the perfect time to address Lupus in Men.  Many think of Lupus as a women's disease.  Men can and do suffer from Lupus as well.  It can occur in men of any age, just as with women.  I have come across several men of various ages and ethnicities who have Lupus, and they have the same issues that women have. 

Before puberty, about 1 male will develop Lupus for every 3 females.  In teens and adults, 1 male will develop Lupus for every 10 females.  After the age of 50, 1 male develops Lupus for every 8 females.  These gender differences are seen in only systemic lupus, not in cutaneous (skin) Lupus.  

Males have similar symptoms as females, including joint pain, skin rash and extreme fatigue. The clinical course of Lupus is about the same in both genders.  Males are treated with the same therapies as females.  Some researchers have found that later manifestations of the disease differ between sexes.  Studies have found more severe kidney, nerve and blood vessel disease in males with Lupus compared to females with Lupus. However, there is no great evidence to support a significant difference in severity of Lupus in males and females.  

Researchers are now studying Lupus in aging males.  Young men with Lupus have normal levels of hormones.  Their Lupus activity is usually much worse than older men. Late-onset Lupus may depend on lower levels of male hormones.  (LFA)

Quick Facts:

~ Young men with Lupus have normal reproductive histories.

~ Lupus should not affect their ability to be sexually active.

~ Men with Lupus may not be able to continue working to support his family.

~ They may have difficulty with tasks requiring physical labor.

~ Stress may be caused by the inability to carry on the traditional male role.

~ Men can have hair loss, weight gain and skin rashes.

~ Men are more concerned with loss of job and change of job.

~ False sense of "loss of masculinity" and loss of independence is difficult.