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. 

My Walk for Lupus

The Walk for Lupus was a great SucCeSs.  My wonderful team (Simone's Stars) stopped the show with our t-shirts and signs!! We walked proudly for Lupus and even won the t-shirt contest. Yeah!! I really appreciate all the support that my friends and family have given me.  What else can I ask for?  I am truly blessed and ecstatic to be surrounded by such amazing people.

I met and exceeded my fundraising goal, as did the foundation.  All together we raised approximately $30,000 towards Lupus research.  This is fantastic!  I hope all of the Walks are as successful as ours in Southeastern Michigan.  I had an absolutely wonderful time.  I loved every moment of it. The event was quite a pleasure.  They had refreshments, raffle, information and even FREE massages.  You know I had to get one, it felt great after walking 3 miles :0) I was quite exhausted afterward, but it was definitely worth it.  I love all of my Lupies and Lupus Supporters, and I am thankful!! 

   

  

I am preparing and collecting donations for the Metro Walk for Lupus, which is in September.  There is a link to my donation page on the top right of the blog.  If you missed the first one, I would love for you to support the Fall event.  Thanks!!
Metro Walk for Lupus Donation Page

QUICK FACT 11

✔ Some of the factors that may trigger lupus in people who have the genes that make them prone to develop the disease include infections, ultraviolet light, extreme stress, certain prescription drugs, and hormones. (LFA)

   

June Awareness

June is:
☀ Fireworks Safety Month
☀ Home Safety Month
☀ National Aphasia Awareness Month

☀ National Scoliosis Awareness Month

☀ National Scleroderma Awareness Month

☀ Vision Research Month
☀ National Cancer Survivors Day (6)

☀ Sun Safety Week (6-12)
☀ National Headache Awareness Week (6-12)
☀ National Men's Health Week (14-22)
☀ Caribbean American HIV/AIDS Awareness Day (8)
☀ National ASK Day (21)
☀ National HIV Testing Day (27)
Be aware and educate yourself :0)
Search Amazon.com for men's health Search Amazon.com for scoliosis 

Sun Safety Myths

Protecting ourselves from the Sun is very important.  These myths are not true:

☼ A beach umbrella keeps you safe from the sun.
Not true. A large percentage of ultraviolet (UV) light bounces off the sand onto your skin, even if you’re under an umbrella. Water and snow have the same reflective effect.
☼ Building a "base" tan protects against sunburn.
There is no such thing as a "safe" tan that will offer protection later. Exposure to UV rays increases your lifetime risk of skin cancer and other skin damage.

☼"Self-tanning" products help protect against sunburn.
These products may be perfectly safe and may be a good way to make yourself appear tan without having actual sun exposure. But be aware that the dyes in self-tanning lotions and sprays don’t offer complete UV protection. 

☼Only the people with cutaneous lupus, or with systemic lupus and photosensitivity, need to worry about UV protection.
No matter how lupus affects you, you need to be aware that certain medications can make you unusually reactive to UV light. Called "chemical photosensitivity," this can result in sunburn or rash after even brief sun exposure. The drugs known to cause this type of skin sensitivity are antihistamines, diuretics, non-steroidal anti-inflammatory drugs and antibiotics, including tetracycline or"sulfa" drugs. Sunscreens offer only limited UV protection for anyone taking these medications.
(Lupus Now Magazine 2005)


     












Search Amazon.com for sun protection Mustela Very High Sun Protection Lotion SPF 50

Depending on how lupus affects their body, some people with lupus may need additional care from specialists, like a dermatologist for skin problems, a nephrologist for kidney disease, or a cardiologist for heart complications.

Lupus, The Great Imitator

Did you know that Lupus is sometimes referred to as the Great Imitator? Lupus symptoms are very similar to those of several other common illnesses.  The most common symptoms of Lupus are fatigue, headaches, anemia,  joint pain, sun sensitivity, discoloration of fingertips in cold, fever, swelling, chest pain, butterfly rash, hair loss, blood clotting, and tiredness.  Quite the list in my opinion, but lets keep in mind that those are only the most common. 


Many of these symptoms can occur in other conditions and illnesses, such as arthritis, Lyme disease, diabetes, chronic fatigue syndrome, pneumonia, alopecia, hemophilia and more.  This is why Lupus is called the Great Imitator, its symptoms are like the symptoms of many other conditions and illnesses.
 Full Article Here


I believe that this is also a reason that it is so difficult to diagnose Lupus.  When diagnosing Lupus doctors have to analyze multiple physical symptoms and test results.  The fact that every Lupus patient is unique (different combinations and severity of symptoms) increases the difficulty of diagnosing and treating the illness.  Lupus seems to imitate many illnesses.  Oh lucky me!! I get a taste of it all. I have even managed to develop the imitator (Lupus) and the imitated (arthritis).  Many of us have at least one other illness to accompany Lupus throughout our life.  All we can do is learn to cope and live life to the fullest.  Education is key!!  You should know what is going on with your body.  Take care and spread awareness!! 


With Love ღ
Simmi

QUICK FACT 10

✔Most people with lupus will experience joint pain without swelling. However, lupus is not a form of arthritis. (LFA)