From The Pen Of A Survivor.....

DLE (Discoid Lupus Erythematosus)
I remember the day (several years ago) when I was diagnosed with a disease that affects the skin
Although less serious than SLE it results in the sun not being your friend
For years I’ve tried to ignore it and not claim it as my own
It became evident as the scars became apparent and as time went on the lesions started to grow
I mean how can I ditch the sun which puts a smile upon my face
As it shines on me now those once happy beams have now become deadly rays
The doctor says I need medication to help combat the symptoms
But the affects of the drug are far worse than the disease itself and to make myself sicker to become better to me seems dumb
The days when I am in pain I try to smile a little bit more
Although I move a little slower I keep what I am feeling behind my closed door
I hide the scars, pull my hair back and pray that the symptoms subside
And pack on the sunscreen before I go outside
Grab my big brimmed hat and cover up as if it’s raining so my skin can hide
And pray to God daily for those who are sharing the ride.

By Chenelle Marshall
www.lifelinkpublishing.com

Hope For The Holidays

Toy Drive & Homeless Feeding
December 15, 2012 8am - 8pm
Tabernacle MB Church 2801 South Jackson Seattle, WA

Every child desires to open at least one gift on Christmas. Would you like to contribute in putting a smile on a child's face this holiday season by donating an unwrapped toy or educational item?

Thousands are living on the streets, in shelters or transitional houses. Join Sisters Against Lupus & Tabernacle MB Church in providing transportation, a hot meal and toiletries for those in need.

Toys, educational items, hats, gloves, scarves and toiletries can be taken to Tabernacle MB Church Tuesday - Friday 9am - 4pm.

If you are interested in volunteering contact info@sistersagainstlupus.org

THANKSGIVING & LUPUS

Thanksgiving can be a rough holiday for many Lupus fighters. Many of us enjoy cooking a big feast for our families and as with everythings, Lupus can make it hard.  Below are a few tips that may help.

1. Keep a chair in the kitchen. One on wheels is especially helpful. Being able to sit down to do cooking and cleaning tasks greatly reduces the energy used therefore allowing you to do more tasks.

2. Ask for help. Enlist your spouse, children, friends or family. Even a little bit of help goes a long way.

3. Take breaks often. Sit down and relax for at least 5 minutes, at least every half hour. This can really recharge your batteries.

4. Sleep in. Ask somebody else to put in the turkey at 6am so that you get plenty of rest and you feel good the whole day.

5. Prepare for a long day the day before and the day after. Get extra rest on Wednesday. Don't make plans for Friday incase you need more rest.

6. Go out to eat. If you are just not up to cooking, do not feel bad about going out. There are restaurants open and many have special holiday menus.

7. Avoid trigger foods. We tend to "go crazy" on Thanksgiving, but a flare is just not worth it. Eating more of the proteins, fruits and veggies than the sweet desserts and heavy starches can give you more energy to last the whole day.

Thanksgiving is also a good time to reflect on the good things in your life. Sometimes Lupus gets us down and feeling like we have nothing to smile about, but there is always something to be thankful for! Our families, our friends, our skills and talents, our homes, our jobs, our memories, our experiences, the health we do have, there is always somebody worse off than us. Gratitude is a great weapon against depression!

Thanksgiving is a time we gather together with our families and friends. That is always an opportunity to educate them about Lupus, the need for Lupus Awareness and Research. Maybe somebody would be interested in donating to or volunteering for a Lupus charity.

www.cure4lupus.org

How a Reader Faces Lupus 1 Day at a Time

By Karin Gelschus

WebMD the Magazine - Feature

Reviewed by Brunilda Nazario, MD

WebMD's My Story: How a Reader Faces Lupus 1 Day at a Time

Karin Gelschus turned her life around when she changed her attitude about her chronic disease.

At 23, I was on top of the world. I had my dream job as a writer and traveled all over North America to research stories. I bought my first townhouse. I was loving life.

After a trip to Montreal, I developed the flu. I was exhausted. I often got tired after trips, but this time was different. My hands were shaking, my joints were stiff, and my heart was racing. I could barely make it up the stairs. In the days following, my symptoms worsened. The pain felt even worse when doctor after doctor could not figure out what was wrong. They tested me for Lyme disease, rheumatoid arthritis,tuberculosis, and a dozen other diseases. Finally, after months of excruciating pain, I was diagnosed with lupus, a chronic and very serious autoimmune disease that can damage the joints, organs, and skin.

It can take months for lupus medications to start working, and I got much sicker before I got better. Forty pounds underweight and discouraged, I realized I had to do something to escape the dark, lonely place I found myself. That summer, I started turning things around.

I thought to myself, "I can't control what's happening to my body, but I can control my thoughts. So what can I do to stay positive?" I looked for ways to make myself feel better every day.

Then, as now, I turned to my family and friends for support. They listen when I need them to, offer advice when I ask, and join me every year in running a 5K for lupus research. Having a strong support network and giving back floods me with inspiration and happiness.

At 27 years old, I've overcome more than most in their entire lifetimes, and I'm proud to have the strength to continue to fight such a complex disease.

Questions to Ask Your Doctor About Lupus

1. Could another condition or medications be causing my lupus symptoms?

2. What lifestyle changes can I make to manage my lupus?

3. Are there support groups in my area for people with lupus?

4. Do I need to see other specialists?

5. How often should I come in for checkups?

Karin's Tips on Coping With Lupus

"Leave yourself notes. I put one that reads 'You'll feel better once you get moving' on my nightstand and one that reads 'We make you feel better' on my pill box. These notes make me smile!"

"Keep a journal. I keep one of inspirational quotes, nice things said about me, and small goals I achieve, like running three miles or getting an A."

Source: http://lupus.webmd.com/features/webmd-my-story-reader-faces-lupus-one-day-at-time

What is Lupus?

Lupus is an autoimmune disease where the body's immune system becomes hyperactive and attacks normal, healthy tissue. This results in symptoms such as inflammation, swelling, and damage to joints, skin, kidneys, blood, the heart, and lungs.

Under normal function, the immune system makes proteins called antibodies in order to protect and fight against antigens such as viruses and bacteria. Lupus makes the immune system unable to differentiate between antigens and healthy tissue. This leads the immune system to direct antibodies against the healthy tissue - not just antigens - causing swelling, pain, and tissue damage.
(* An antigen is a substance capable of inducing a specific immune response.)

Source: http://www.medicalnewstoday.com/info/lupus/

"Survivors Circle" Lupus Support Group Saturday June 23rd

  Join us at 10:30AM along with our special guest:

Naturopathic Physician Dr. Karen Hurley

Federal Way Library

(Meeting room #1)

848 South 320th Street

Federal Way, WA 98003

Survivors often feel a void and need extra support and resources to help cope with Lupus.

It's our goal to fill that void by offering this monthly safe haven that nurtures hope, support and empowerment to those affected in any way by Lupus.  This includes not only Lupus Survivors but their families as well. When one member battles Lupus it affects the whole family! 

Will you join us for an exciting time to mingle, share stories and coping strategies with others?  

RSVP to info@sistersagainstlupus.org  

or 253-293-1699

Please invite anyone you know affected by Lupus

Together We Are A Cure Lupus Walk Pictures are HERE

Click HERE To view all photos

 

Click HERE To view all photos

THANK YOU!!

Sisters Against Lupus (SAL) is very grateful for your generous support at our 1st Annual “Together We Are The Cure” Lupus Walk.  We thank you for making it a HUGE success.  No matter how big or small, your contribution does not go unnoticed. 

It was a beautiful sunny day as hundreds gathered to spread Lupus awareness. Men, women and children danced and cheered in celebrating the end of their fund raising efforts for such a worthy cause.  Survivors from Seattle to Portland passionately united with one voice, to make a difference for a disease that has been getting little to no publicity.  We are hopeful that a new day has come. Lupus Must Die...Lupus WILL Die!!

The results of uniting together……..a grand total of

$16,498
(Your donation is tax deductible. Tax I.D. # 36-4672431)

Your charitable donation will support Sisters Against Lupus and our mission of spreading awareness, providing funding for research, as well as provide assistance with medicine, medical bills and other day to day needs of Lupus survivors who battle this disease on a daily basis.

This event would not have been successful without the minds, hands and feet of over 60 volunteers!!  It was amazing having you all there.  Thank you for sharing your time, talents and energy to help make the Lupus Walk a huge success.

A special thank you to all of our family, friends, neighbors, churches, businesses, schools, and athletes who pitched in to make this day even better than what we could ever imagined.  Together We Are The Cure!!

Vendors

Advocare, Benlysta, Chocoleshea, Liquid Nitro, Miss Black WA 2012

Survivor’s Circle Lupus Support Group

Sponsors & Supporters

Acapella Design, Ben Singleton, CenturyLink SOMOS, Crystal & ShaQuella Perine, Crystal Springs, Draze Maraire, Eddie Francis, Erinn Fleeks, Electronettes Drill & Drum Team, Facts Newspaper, Gorilla Graphics, Ink Minded , ILC ~Integrity Life Church, Josh Warren ~DJ JDUB, KeyAunna Johnson, Kristal Clark , LA Fitness, Marcus Delgado & The Rainwater Group, Mario Bailey, Mr & Mrs Steve Polzin, Myeesha Parker, Renton High School, Restoration Bible Church, Ronee McKinney, Sams Club, Sean Goode, Sign-A-Rama, Tabernacle MB Church, Tia Yarbrough, Toni Hardy, Urbel Entertainment

 

Athletic Supporters

Al Snow, Brandon Roy, Jamal Crawford, Jordan Babineaux,

Seattle Storm, Shawn Kemp, Will Conroy

2012 Teams

Choc Walks, Clark McDonald Johnson Family, Keaton’s Against Lupus, Koop’s Krew, Lambda Tau Upsilon, Love Is The Cure, Miss B’s Crew, Sandi’s Super Sidekicks, Team Asha B, Team Brooke, Team CAJ, Team Century Link SOMOS, Team Gamma Pi, Team Jessica, Team Kinlow, Team Mario Bailey, Team McNair, Team Rejoice, Team S1, Team Sereal, Team Tina Marie, Team Wolf Pack Against Lupus, Yedit’s Family & Friends

PICTURES COMING SOON...... :)

LUPUS AWARENESS DAY 31

Fact of the day.............  

Currently, there's

NO CURE 

For Lupus


TOGETHER We Are The CURE!!!


http://www.lupusmustdie.com/

E-mail sistersagainstlupus@gmail.com To get involved, ask questions or share comments

LUPUS AWARENESS DAY 30

Fact of the Day........

Individuals with lupus are at increased risk for osteoporosis.  Here’s why: 

• Certain treatments for lupus, such as glucocorticoid medications (Prednisone), which can cause bone loss
• A more sedentary lifestyle due to pain caused by lupus, which can increase osteoporosis risk
• A possible link between lupus and bone loss in general

Furthermore, studies suggest an increase in bone loss and fracture in individuals with lupus. In fact, women with lupus may be five times more likely to experience a fracture from osteoporosis.

One must also consider that weight, genetics, and whether one smokes also contribute to early bone loss. 

Source: http://lupus.about.com/od/livingwithlupus/a/LupusAging.htm

LUPUS AWARENESS DAY 29

Fact of the day.....

 

Symptom activity tends to improve with age

  

As a person ages, lupus activity –- or the degree of inflammation and auto-immunity present –- typically declines. This may lead to adjustments in treatment (including a reduction in medication).

On the flip side, severity of the disease can increase, which means the sum of your disease activity in the past, including the damage it has caused. This could lead to physical therapy, joint replacements or other non-pharmacological treatments as you age. 

Source: http://lupus.about.com/od/livingwithlupus/a/LupusAging.htm

LUPUS AWARENESS DAY 28

Fact of the day..........

Lupus can be expensive to manage and live with. A recent study found that the average annual cost to provide health care for a person with lupus was $12,643, and was nearly $21,000 when lost productivity on the job due to illness is included.

 

Source: Lupus Foundation of America

LUPUS AWARENESS DAY 27

Fact of the day......

Eye disease occurs in approximately 20 percent of people with lupus. The disease can affect the eyeball, the retina, and the muscles that control eye movement.

LUPUS AWARENESS DAY 26

Fact of the day......

Lupus can be expensive to manage and live with. A recent study found that the average annual cost to provide healthcare for a person with lupus was $12,643, and was nearly $21,000 when lost productivity on the job due to illness is included.

Source: Lupus Foundation Of America

LUPUS AWARENESS DAY 25

Fact of the day..........

Since many symptoms of lupus mimic those of other illnesses, lupus often can take three to five years to diagnose. Symptoms of lupus can come and go over time, which makes a definite diagnosis more difficult.

LUPUS AWARENESS DAY 24

Fact of the day...........

Lupus is an autoimmune disease that can damage any organ in the body and can cause life-threatening consequences. 

LUPUS AWARENESS DAY 23

Fact of the day.........

Approximately two-thirds of people with lupus will develop some type of skin complication.  This often is in the form of a rash or sores, most of which will appear on sun-exposed areas, such as face, ears, neck, arms, and legs.

Source: Lupus Foundation of America

LUPUS AWARENESS DAY 22

Fact of the day......

It is estimated that as many as 40 percent of all people with lupus, and as many as two-thirds of all children with lupus, will develop kidney complications that require medical care and treatment.

Source: Lupus Foundation of America

LUPUS AWARENESS DAY 21

Fact of the day.......

The Risks of Pregnancy for Women With Lupus

Lupus is a disease that most commonly affects women during their childbearing years. In the past, women with lupus were advised not to get pregnant because it was thought to be too dangerous for both mother and baby. Although pregnancy with lupus is still considered high risk, most women with lupus who want to have children will be able to have safe, successful pregnancies.

Source:   http://www.everydayhealth.com/lupus/pregnancy-risks-with-lupus.aspx

LUPUS AWARENESS DAY 20

Fact of the day.......

Though researchers don't know precisely what causes lupus, some common threads are seen in the vast majority of lupus cases. Your gender, age, genetic background, and environmental factors can all play a role in your level of risk

Source:  http://www.everydayhealth.com/lupus/index.aspx?xid=m_cc&utm_source=msn&utm_medium=cpc&utm_term=lupus&utm_campaign=EH|CC|Immune%20System|MST&s_kwcid=TC-4324-4805019408-e-423605347

LUPUS AWARENESS DAY 19

Fact of the day........

In all, Hispanic and black patients with SLE were twice as likely as whites to also have nephritis, kidney failure and inflammation of the heart lining, all of which complicate the treatment and severity of the disease, according to the researchers

Read more: http://www.healthline.com/healthday/lupus-worse-in-blacks-hispanics-than-in-whites-study-finds#ixzz12t3r0Xs1
Healthline.com - Connect to Better Health

LUPUS AWARENESS DAY 18

Fact of the day.........

• Two-thirds of lupus patients in a LFA study reported complete or partial loss of income due to complications with their disease. 

• Annual average cost to provide medical treatment for a person with lupus: $6,000 to $10,000, with some treatment costing several thousand dollars a month. 

Email questions or comments to sistersagainstlupus@gmail.com

source: http://lupus.about.com/od/lupus101/a/LupStats.htm

LUPUS AWARENESS DAY 17

Fact of the day........

How many people get lupus? And how many die from the disease? And what’s the medical cost of having the disease? Basically, what are some key statistics? 

• Approximately 1.5 million Americans have a form of lupus.
• Systemic lupus erythematosus cases: 70%.
• Of individuals diagnosed with lupus, 90% are women.
• Eighty percent develop lupus between the ages of 15 to 45.
• Lupus is two to three times more prevalent among people of color.
• Chance of a parent or sibling having or developing lupus: 20%.

Email questions or comments to sistersagainstlupus@gmail.com

source: http://lupus.about.com/od/lupus101/a/LupStats.htm

SAL LUPUS WALKATHON

We are so excited about our 1^st Annual TOGETHER We Are The Cure LUPUS WALK Saturday, May 26^th 2012 at Liberty Park in Renton, WA

 
There will be entertainment, games, face painting, raffles, prizes and lots of FUN!! Bring your friends, family, pets, neighbors and coworkers to walk and make a difference! Registration: 9:00AM  Start time: 10:00AM

  

We WALK to spread awareness, to give hope, to inspire, to make a change and to FIND A CURE!

It's easy to Register to Walk to join an existing team or you can also create your own personal team in honor of or in memory of a loved one. 

www.lupusmustdie.com

May is Lupus Awareness Month and to show our commitment to this cause, we will be raising funds in support of the LUPUS MUST DIE movement!  The purpose of this movement is to unite those affected by lupus to be the voice within our own community.  This great movement will begin in the states of California, Georgia, Maryland/DC, Mississippi, New Jersey, New York, Nevada, Oregon, Texas, Virginia and Washington. This spark of hope will unite many voices, all singing the same song to create more awareness, to give hope and to find a cure.  Since there is little to no publicity about this illness, it is up to us…..Together We Are The Cure!!

If you have been affected by Lupus and live in one of the states above, please contact us at info@sistersagainstlupus.org for additional information on joining the Lupus Must Die movement

FACTS ABOUT LUPUS

For those of you who are unfamiliar with lupus, lupus is a chronic autoimmune disease where the immune system of the body attacks its own cells and tissues. Specifically, the joints, skin, kidneys, lungs, heart, nervous system, and other organs of the body are affected.

• More then 1.6 million people across the nation suffer lupus
• Lupus is two to three times more prevalent among people of color
• Lupus is chronic disease with no cure 

Want more facts??...... Click HERE 

Please visit http://www.lupusmustdie.com/ or email us at info@sistersagainstlupus.org  

Together, We Are The Cure!

Lupus AWARENESS DAY 16

Fact of the day..........

WOW.....

A survey from the LFA discovered that over 50% of respondents suffered for more than four years before their lupus was properly diagnose.

Source: http://lupus.about.com/od/lupus101/a/LupStats.htm

LUPUS AWARENESS DAY 15

Fact of the day........

What are other risk factors?

Other risk factors include exposure to sunlight, certain prescription medications, infection with Epstein-Barr virus, and exposure to certain chemicals.

Source:  http://www.medicalnewstoday.com/info/lupus/

Email questions or comments to sistersagainstlupus@gmail.com

LUPUS AWARENESS DAY 14

Fact of the day.........

Can a fetus have lupus??

A rare condition, neonatal lupus occurs when a mother passes autoantibodies to a fetus. The unborn and newborn child can have skin rashes and other complications with the heart and blood. Usually a rash appears but eventually fades within the first six months of the child's life.

Source:  http://www.medicalnewstoday.com/info/lupus/
Email questions and comments to sistersagainstlupus@gmail.com

HAPPY MOTHERS DAY!!

SAL is wishing a happy (Belated) mothers day to all the mothers!  

For all the mothers who suffer and have to live a life with Lupus, we pray you continued strength and encourage you to keep on pushing forward!!!! To all the daughters and sons, husbands, continue to support, love and be there, your play a BIG role and know that all your deeds do not go unnoticed!! Moms, you are often times the glue that holds everything & everyone together, and we want to THANK YOU for all you've done and everything you still do regaurdless of Lupus.   Happy Mothers day from Sisters Against Lupus. 

LUPUS AWARENESS DAY 13

Fact of the day.....

Have you heard of Drug-induced lupus??

Drug-induced lupus is caused by a reaction with certain prescription drugs and causes symptoms very similar to SLE. The drugs most commonly associated with this form of lupus are a hypertension medication called hydralazine and a heart arrhythmia medication called procainamide, but there are some 400 other drugs that can also cause the condition. Drug-induced lupus is known to subside after the patient stops taking the triggering medication. 

Source:  http://www.medicalnewstoday.com/info/lupus/

Email all questions and comments to sistersagainstlupus@gmail.com

LUPUS AWARENESS DAY 12

fact of the day.....

Can you inherit a lupus gene?

Since lupus is known to occur within families, doctors believe that it is possible to inherit a genetic predisposition to lupus. There are no known genes, however, that directly cause the illness. It is probable that having an inherited predisposition for lupus makes the disease more likely only after coming into contact with some environmental trigger. 

source: http://www.medicalnewstoday.com/info/lupus/

Image of lupus rash

Lupus rash is red or purplish and mildly scaly, appearing on the face (butterfly or malar rash) and symmetrically on the arms, fingers, or legs.

"Illustration copyright 2002 by Nucleus Communications, Inc."

LUPUS AWARENESS DAY 11

Fact of the day.......

Why is Lupus hard to diagnose?

-- Symptoms of lupus often mimic other less serious illnesses and sometimes are dismissed.

-- Lupus fluctuates between periods of increased disease activity (called flares) and periods of decreased disease activity (called remission), where symptoms may not be noticeable.

Make a donation or register to walk today @ www.lupusmustdie.com

Source: http://www.medicalnewstoday.com/articles/64182.php

TODAY IS WORLD LUPUS DAY!!

Lupus is an unpredictable and complex autoimmune disease that causes inflammation and can damage any organ in the body with life-threatening consequences. There are eleven known symtoms of Lupus. It is recommended that if you have four or more of the eleven symptoms, you should consult with a rheumatologist

*Butterfly-shaped rash across cheeks and nose
*Scaly disk-shaped rash on face, neck, ears, scalp, chest
*Sunlight sensitivity
*Mouth sores, tongue sores, inside nose sores
*Arthritis pain in joints
*Pain in chest and side when breathing or moving
*Kidney problems
*Neurologic problems
*Blood problems such as anemia, low white cell count
*Immune system malfunction
*Antinuclear antibodies 

This is an illness that's getting little to no publicity...  so its up to us!!! LUPUS MUST DIE!!! 

Today is a perfect day to show your support by making a financial donation to help us continue the great work of supporting survivors, spreading awareness and raising funds for research. Donate here -------> www.lupusmustdie.com