TO ORDER THIS BOOK: GO TO WWW.LUPUSINTERNATIONAL.COM
"The Lupus Book" by Daniel J. Wallace, M.D.
You can go to www.LupusNow.Org to order your copy of Lupus Now magazine. *They are also available to those who cannot afford the subscription*
Heroes
HEROES COME IN MANY SHAPES AND SIZES AND MINE ARE MY PARENTS, MY BROTHER, MY AMAZING BOYFRIEND, MY LATE GRANDFATHER WHO TAUGHT ME SO MUCH ABOUT LIFE(R.I.P GRAMPS) AND EVERYONE WHO LIVES WITH THIS UNPREDICTABLE DISEASE..and to the families who support us~ THANK YOU SO MUCH!!! ONE OF MY HEROES LIVES WITH MS AND SHE IS MY DEAREST COUSIN DIANNE~ I LOVE YOU COUSIN =)
and all of those who dedicate their time for Lupus awareness and research... And we cannot forget all doctors who care for LUPUS patients!
My gramps died in 2004 due to complications from Diabetes, Type 2. I miss him so much! He was the best grandfather I could have ever asked for.
This site is dedicated to my boyfriend, MY HERO! You have inspired me so much and I cannot thank YOU enough for all that you are BabY~~ I am so blessed to have you in my life. **XoXoXoXoXoX**
My boyfriend and I have made this site to spread Lupus Awareness.Many people are unaware of this disease that can be debilitating...
I was officially diagnosed with SLE in 2004 after many years of unsolved health problems. Since then I have developed Stills Disease, which is a form of Rheumatoid Arthritis(RA)
, Raynauds Phenomenon, Fibromyalgia, Chronic Bronchitis, and CNS tremors/involvement. I AM 23 YEARS OLD AND I AM LIVING WITH LUPUS. MY LIFE HAS DRAMATICALLY CHANGED SINCE I FIRST HAD SYMPTOMS. HOWEVER, I REFUSE TO LET LUPUS TAKE OVER MY LIFE. I AM A COLLEGE STUDENT AND I AM DOUBLE MAJORING IN PSYCHOLOGY AND SOCIOLOGY.MY BOYFRIEND AND I HAVE DEDICATED OUR LIVES TO SPREADING LUPUS AWARENESS!
Lupus is one of America's least recognized major diseases. Nearly 1.5 million Americans have lupus. In fact, more Americans have lupus than cerebral palsy, multiple sclerosis, sickle-cell anemia, and cystic fibrosis combined, making it one of this country's most prevalent medical problems. However, while lupus is widespread, awareness and accurate knowledge about it is UNKNOWN to many!
This site is for those who live with LUPUS or know someone who does or even supporters who want to support our cause.**SOMEONE YOU KNOW HAS LUPUS**
Not all LUPUS patients are exactly the same and our symptoms may vary. Being a LUPUS advocate has taught me that there are many faces of LUPUS. I am here to spread LUPUS AWARENESS and to support all of us who are affected by the disease.
~~KEEP FIGHTING~~ NEVER GIVE UP~~KEEP YOUR HEAD UP~~BE BRAVE~~ In result of living with Lupus, the disease has taught me to appreciate the little thing in life. I am a stronger person because of IT and EVERYDAY I am fighting to live my life to the fullest!! With the support of my family, my friends and boyfriend I am able to live a positive life despite LUPUS!!
NOTE-------::: When someone has been diagnosed with Lupus many questions can arise. What is Lupus and what happens to the body?....A healthy immune system is what helps us fight off viruses or the common cold. Lupus is classified as an Autoimmune disease and with Autoimmune diseases, the immune system begins to think that the body is a virus. The immune system begins to attack the body in many ways.....
The resources that we provide are not intented to diagnose or treat Lupus.
What are the most common symptoms of lupus?............... Most people with lupus have symptoms in only a few organs. If you have not already been diagnosed, the following table may alert you to the possibility of lupus. If you have already been diagnosed, these symptoms may indicate increased activity of the disease, known as a “flare.” You may also have periods of remission when few or no symptoms are present. For most people, lupus can be managed and will affect only a few organs. Others may face serious, sometimes life-threatening problems.
Common Lupus Symptoms
Achy joints (arthralgia)
Fever over 100 degrees F
Swollen and painful joints (arthritis)
Prolonged fatigue
Skin rashes
Anemia
Swollen ankles (kidney involvement)
Chest pain upon deep breathing (pleurisy)
Butterfly-shaped rash across cheeks and nose
Sensitivity to sun (photosensitivity)
Unusual hair loss
Abnormal blood clotting problems
Pale or purple fingers from cold or stress (Raynaud’s Phenomenon)
Seizures
Mouth ulcers (often painless, at roof of mouth)
-Diagnosing Lupus........................................
Lupus is chronic, complex, and difficult to diagnose. No single lab test can tell if you have lupus. Many lupus symptoms imitate symptoms of other diseases and often come and go. Your primary care doctor or rheumatologist will use your medical history, a physical exam, and many routine as well as special tests to rule out other diseases. Many physicians also use the American College of Rheumatology’s “Eleven Criteria of Lupus” to aid in the diagnosis of lupus. The criteria include symptoms as well as specific laboratory findings that provide information about the functioning of a person’s immune system. In most cases, the diagnosis of lupus is made when four or more of the criteria have occurred at some time.
The "Eleven Criteria"
*Malar rash: butterfly-shaped rash across cheeks and nose
*Discoid (skin) rash: raised red patches
*Photosensitivity: skin rash as a result of unusual reaction to sunlight
*Mouth or nose ulcers: usually painless
*Nonerosive Arthritis (bones around joints do not get destroyed): in 2 or more joints with tenderness, swelling, or effusion
*Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
*Neurologic disorder: seizures and/or psychosis/cognitive dysfunction
*Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
*Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
*Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
*Antinuclear antibodies (ANA): positive test in absence of drugs known to induce it
Lupus Treatments .......................................
While there is no cure for lupus, there are treatments. Early diagnosis and appropriate treatment can help manage the symptoms of lupus and lessen the chance of permanent damage to organs or tissue.
Once a lupus diagnosis is established, patients are assessed for damage to major organs (central nervous system, kidneys, heart, or lungs). Treatment depends on the activity and extent of the disease, and can range from over the counter pain relievers and anti-inflammatories to prescription medication, therapy, dietary changes, and lifestyle changes such as staying out of the sun, wearing sunblock, and avoiding stress.
-Possible Medications for Lupus-
**NSAIDS, nonsteroidal anti-inflammatory drugs, are used to relieve achy joints and arthritis in mild lupus when pain is limited and organs are not affected.
**Antimalarial drugs, such as hydroxycholorquine, are often prescribed for arthritis or skin problems.
**Corticosteroids, such as prednisone, are used for major organ involvement. The dosage prescribed will depend on the type of organ involvement, symptoms, and blood-test results.
**Immunosuppressive agents, such as azathioprine (Imuran), methotrexate, cyclophosphamide, cyclosporine, and mycophenolate mofetil (CellCept), are potent drugs that help control the overactive but misdirected immune system in lupus patients. They help limit damage to major organs and are closely monitored to counter the potentially serious side effects and complications.
LUPUS IS A CHALLENGING DIAGNOSIS-NOT ONLY FOR THE DOCTOR, BUT ALSO FOR THE PATIENT. THE MEDICATIONS HAVE SO MANY SIDE EFFECTS AND THE LAST LUPUS MED TO BE APPROVED WAS OVER 40 YEARS AGO!! THAT WAS PLAQUENIL.... RESEARCH AND FUNDING IS DESPERATLEY NEEDED AND RECOGNITION OF THE IMPACT LUPUS HAS ON OUR LIVES MUST BE SPREAD!
Who I'd like to meet:
WE WOULD LIKE TO MEET ALL OF THOSE WHO LIVE WITH LUPUS. WE WOULD ALSO LIKE TO GIVE SUPPORT TO FAMILY MEMBERS OR FRIENDS WHO KNOW SOMEONE WITH LUPUS. OUR MISSION IS TO SPREAD LUPUS AWARENESS AND TO SUPPORT ONE ANOTHER. OUR GOAL IS TO MEET MANY FACES OF LUPUS AND TO SPREAD LUPUS AWARENESS THRU NETWORKING!
LIVING WITH LUPUS MIGHT BE COMPLICATED AND THE REALITY MAY BE DIFFICULT, BUT YOU NEED TO ACCEPT THE DISEASE. EVEN THOUGH IT IS NOW A PART OF YOUR LIFE, THE EMOTIONAL ASPECT MAY BECOME OVERWHELMING. BE TRUE TO YOURSELF AND KNOW THAT BY KEEPING YOUR EMOTIONS HIDDEN WILL ONLY CAUSE MORE DENIAL OF THE DISEASE! THERE IS NO REASON WHY LUPUS SHOULD BE KEPT A SECRET; SHARE IT WITH OTHERS AND JOIN US IN SPREADING AWARENESS! EACH ONE OF US CAN MAKE A DIFFERENCE AND IT IS YOUR DECISION TO TAKE THE OPPORTUNITY TO BECOME A LUPUS ADVOCATE=)
WE THANK YOU SO MUCH FOR VISITING OUR SITE AND FOR SUPPORTING OUR MISSION~~
KARENA AND VICTOR
Hi Karena, How have you been? I've been so and so. Feeling so tired all the time. Sorry I haven't kept in touch with you more often. I hope your doing better from the last time we spoke. Take care and may God bless you.
"Freedom has its life in the hearts, the actions, the spirit of men and so it must be daily earned and refreshed -- else like a flower cut from its life -- giving roots, it will wither and die." ~Dwight D. Eisenhower
"Those who deny freedom to others deserve it not for themselves." ~Abraham Lincoln
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