Hello Friends and Family!
On Saturday March 4th, I'll be participating in the annual Los Angeles ‘Walk and Rock Twilight Stroll’ Lupus Fundraiser at the Rose Bowl in Pasadena. Please feel free to forward this link, or if you'd like, please join the team to help spread awareness and to raise funds for much needed research!
I will be walking in honor of my cousin Jeanine who was diagnosed with Lupus at the young age of 19, and dealt with chronic pain and illness, along with many hospitalizations and surgeries, for almost 25 years due to Lupus Nephritis. In late 2014 Jeanine was hospitalized unexpectedly and spent five weeks in the ICU as she suffered through devastating complications. She was transferred to palliative care and passed on January 12th 2015 at the young age of 43 as this cruel, poorly understood disease took too much of a toll on her body.
I’m also walking in support of my cousin Erinn, Jeanine’s youngest sister, who was also diagnosed with Lupus in 2009. She too suffers from chronic pain and unpredictable illness and had to have both of her hips replaced when she was just 27 years old!
100% of every dollar raised through the Lupus Research Alliance's Walk program goes to funding research. Whatever you may be able to give would help and is very much appreciated!
But more importantly, I want to pass this info along to help raise awareness. Lupus is one of America’s least recognized major diseases. After many years of research, it is still very much a mystery to doctors and scientists.
Thank you all for your kindness and generosity!
SOME LUPUS FACTS:
There is NO KNOWN CAUSE of Lupus.
There is NO CURE.
It took over 50 years to develop the 1st and ONLY drug approved to treat Lupus in 2011
• Lupus is a chronic autoimmune disease in which a person’s immune system becomes overactive and mistakenly attacks its own healthy tissue, cells and organs. Lupus symptoms can range from mild to severe and are highly unpredictable. The tissues and systems involved may change and the intensity of involvement may vary with time.
• Lupus can take years to diagnose as the symptoms usually begin as vague flulike aches, fevers, rashes, joint pain, fatigue, and those that mimic other diseases. It’s a complicated condition that’s difficult to diagnose – no single test can definitively detect it – and it is complex to treat since no two cases are alike
• If left untreated, and in more severe cases, Lupus can cause kidney failure, central nervous system complications like seizures and strokes, blood clots, miscarriages, lung failure, heart disease, high blood pressure, vascular problems, cancer, and an early death.
• Lupus is one of America’s least recognized Major Diseases. While Lupus is widespread, awareness and accurate knowledge about it is lacking
• An estimated 1.5 million Americans suffer from Lupus, making it more common than leukemia, muscular dystrophy, cerebral palsy, multiple sclerosis and cystic fibrosis combined. It is believed that 5 million people throughout the world have a form of Lupus.
• 90% of people with Lupus are women, and it strikes mostly women of childbearing age (15-44) It is believed that estrogen may play a part in the manifestation of the disease, although men and children can also develop Lupus.
• Women of color are two to three times more likely to develop Lupus than Caucasians.
• 87% of Lupus patient downplayed symptoms in order not to upset family members.52% minimized their symptoms to doctors or found symptoms hard to describe.72% of doctors said they were not aware of the severity of their patient’s symptoms.
WHAT CAUSES LUPUS?
Researchers and scientists believe that lupus develops in response to a combination of factors both inside and outside the body, including genetics, hormones, and environmental triggers. However, they cannot yet determine what exactly sets the disease in motion or how precisely these elements interact. Research into theses areas seek to draw light upon this subject.
No gene or group of genes has been proven to cause lupus. Lupus does, however, appear in certain families, and certain genes have been identified as contributing to the development of lupus, but these associations alone are not enough to cause the disease. This is especially evident with twins who are raised in the same environment and have the same inherited features yet only one develops lupus. Although, when one of two identical twins has lupus, there is an increased chance that the other twin will also develop the disease (25 percent chance for identical twins; 2-3 percent chance for fraternal twins). Lupus can develop in people with no family history of lupus, but there are likely to be other autoimmune diseases in some family members.
Certain ethnic groups (people of African, Asian, Hispanic/Latino, Native American, Native Hawaiian, or Pacific Island descent) have a greater risk of developing lupus, which may be related to genes they have in common.
Hormones are the body’s messengers. They regulate many of the body’s functions. Because nine of every 10 occurrences of lupus are in females, researchers have looked at the relationship between estrogen and lupus. While men and women both produce estrogen, its production is much greater in females. Many women have more lupus symptoms before menstrual periods and/or during pregnancy when estrogen production is high. This may indicate that estrogen somehow regulates the severity of lupus. However, no causal effect has been proven between estrogen, or any other hormone, and lupus. And, studies of women with lupus taking estrogen in either birth control pills or as postmenopausal therapy have shown no increase in disease activity.
Most researchers today think that an environmental agent, such as a virus or possibly a chemical, randomly encountered by a genetically susceptible individual, acts to trigger the disease. Researchers have not identified a specific environmental agent as yet but the hypothesis remains likely. While the environmental elements that can trigger lupus and cause flares aren’t fully known, the most commonly cited are ultraviolet light (UVB in particular); infections (including the effects of the Epstein-Barr virus), and exposure to silica dust in agricultural or industrial settings.
Other examples of known environmental triggers include:
• Ultraviolet rays from the sun
• Ultraviolet rays from fluorescent light bulbs
• Sulfa drugs, which make a person more sensitive to the sun, such as: Bactrim® and Septra® (trimethoprim sulfamethoxazole); sulfisoxazole (Gantrisin®); tolbutamide (Orinase®); sulfasalazine (Azulfidine®); diuretics
• Sun-sensitizing tetracycline drugs such as minocycline (Minocin®)
• Penicillin or other antibiotic drugs such as: amoxicillin (Amoxil®); ampicillin (Ampicillin Sodium ADD-Vantage®); cloxacillin (Cloxapen®)• Infection• Cold or a viral illness
• Emotional stress, such as divorce, illness, death in the family, or other life complications• Anything else that causes stress to the body such as surgery, physical harm, pregnancy, or giving birth
The Lupus Research Alliance’s Walk with Us to Cure Lupus is a national fundraising program that changes lives and brings people together in the common goal to find a cure for lupus.
Lupus is a devastating autoimmune disease that affects an estimated 1.5 million Americans, making the disease more common than leukemia, muscular dystrophy, cerebral palsy, multiple sclerosis and cystic fibrosis. The exact cause of lupus is unknown and there is no known cure.
I choose to walk with Lupus Research Alliance because of its commitment to prevent, treat and cure lupus. Since 1999 the Lupus Research Alliance has committed over $100-million to lupus research, making it the largest private funder of lupus research in the world.
You can make a donation to my personal fundraising page by clicking on Donate Now or "Make a Gift!"
100% of your donation will go to support lupus research programs, because the Lupus Research Alliance Board of Directors funds all fundraising and administrative costs.
By supporting me in my fundraising efforts, we are ensuring that the Lupus Research Alliance can continue to advance medical research and help the many people living with this disease.