I'm on a mission to share my story and educate others on a nightmare called Lupus. Summer of 2008, I become extremely ill. Winter came and I felt a little better. Doctors said it was all in my head & nothing was wrong. Until summer of 2013 when I laid in bed & thought I was dying. Found out I had Lupus & Anti-Phospholipid Syndrome. My immune system is constantly attacking my organs. I'm now living the intense nightmare of these auto-immune diseases
Life, I am the new year.
I am an unspoiled page in your book of time.
I am your next chance at the art of living.
I am your opportunity to practice
what you have learned about life
during the last twelve months.
All that you sought
and didn't find is hidden in me,
waiting for you to search it out
with more determination.
All the good that you tried for
and didn't achieve
is mine to grant
when you have fewer conflicting desires.
All that you dreamed but didn't dare to do,
all that you hoped but did not will,
all the faith that you claimed but did not have -
these slumber lightly,
waiting to be awakened
by the touch of a strong purpose.
I am your opportunity
to renew your allegiance to Him who said,
'behold, I make all things new.'
It's a mysterious disease that often goes undiagnosed for years. Once a patient is diagnosed, they've often never heard of the disease, and neither have their family and friends. Yet lupus is a debilitating disease with many masks.
"We call it the invisible disease," Hui-Lim Ang, founder of Colors of Lupus, a local non-profit organization dedicated to "dispense, deliver and provide immediate physical services and support" for patients of lupus, as well as provide a safe place for patients to share their stories.
Lupus is an autoimmune disease that takes on several forms. Many who have lupus have been to at least four doctors to heal a host of ailments separately that lead to lupus as the disease attacks the skin, joints, the heart, lungs, blood, kidneys and brain, according to the Lupus Foundation of America. Lupus can be fatal, usually attributed to cardiovascular diseases, although with recent medical advances, deaths are becoming increasingly rare.
There are different types of lupus. Systemic lupus accounts for the bulk of cases at roughly 70 percent, which can cause problems in a major organ, such as the heart, lungs, kidneys or brain.
Cutaneous lupus, in which only the skin is affected, shows up in approximately 10 percent of all lupus cases.
Colors of Lupus estimates 13,500 people in Nevada are currently diagnosed with lupus. While lupus is a widespread disease, awareness of the disease lags behind many other illnesses, she said.
Lupus often mimics or is mistaken for other illnesses, making diagnosis difficult. Common complaints include fever, joint pains, muscle pains, unexplained fatigue and temporary loss of cognitive abilities.
"It imitates other diseases and it can be a long, long time before someone knows (they have lupus) and gets the right help," Ang said.
The non-profit began in 2007 and opened its doors in April 2008 at 2400 Tenaya Way. It began when Ang saw that the local support groups simply weren't enough to fulfill the needs of valley residents with lupus.
"There is not much known about lupus," Ang said. "I saw a need and I saw how much it could help here."
Lupus or SLE (Systemic Lupus Erythematosus) is a chronic autoimmune disease that can affect any connective tissues of the human body, according to The Lupus Foundation of America, which estimates that 1.5 million in the United States have been diagnosed with some form of the disease. Of those, 90 percent are women. Lupus is usually diagnosed between the ages of 15 and 44.
The patient's immune system attacks the body's cells and tissues, resulting in tissue damage and often painful inflammation.
The quality of life is the underlying message of Colors of Lupus, Ang said.
"Our mission is to help reclaim the loss of quality of life that this disease has taken away from people," she said. "While LFA and others continue to look for a cause and a cure, we are trying to help. The point is people don't realize how disabling this disease is."
More than half with lupus went undiagnosed for at least four years, according to a recent LFA survey. Almost half of those surveyed reported that they saw three or more doctors before obtaining a correct diagnosis of lupus, usually a rheumatologist, a medical specialist who treats diseases of the connective tissue. "What happened to the people of lupus, they have no where to go to," Ang said. "They have the support groups, but some are so sick they don't want to come out. But if you give them a reason to come out and ways on how to cope with what they have and teach family members, then you build a true support network to help them cope and reclaim their quality of life."
Colors of Lupus has 77 members, 21 of whom suffer from lupus.
"We hardly see them because they are so sick," Ang said, however they benefit from the direct contact with doctors knowledgeable about the disease.
In 2007, local internist Jun Aragon, M.D., was invited by the Executive Director of Colors of Lupus - Nevada, to be one of the board members. He provides free medical consultations to patients with Lupus who are referred by the organization.
"There is no one specific cause of this condition," Aragon said. "Researchers have found evidence to support several likely possibilities, and some believe that the cause may vary from one person to the next."
However there is activity in the medical industry to remedy that, he said.
"Recent studies are focusing on the following: immune system dysfunction, genetic susceptibilities, environmental triggers, and hormonal influences," Aragon said.
Nonsteroidal anti-inflammatory drugs and antimalarials may be prescribed by the doctor to treat symptoms of lupus and keep flare-ups at bay.
"When flare-ups occur, they are treated with steroids," he said. "The doctor may also prescribe certain anti-rheumatic drugs in order to reduce the number of flares, the disease process, and lower the need for steroid use.
Chronic pain affects a large number of patients of lupus, which sometimes call for stronger prescription pain killers.
What can be frustrating for a lupus patient, and their partners, is that the disease is so unpredictable. After a flare-up, that can include something as serious as a stroke; a patient can go into remission for a decade or more.
A dose of education and early intervention can offer hope.
"With early diagnosis and treatment, over 90 percent of patients may survive for more than ten years, and many can live relatively without symptoms," Aragon said.
If your doctor suspects lupus, they will usually look for signs and symptoms of connective tissue damage and inflammation, as well as abnormal blood tests, he said. Lupus may be gene related as the LFA found 20 percent of people with lupus had a parent or sibling with lupus or may develop lupus. As a parent with lupus, the outlook is good in that only about 5 percent of children born to parents with the disease will get lupus.
Treatment is mainly symptomatic as there is yet no cure for lupus. It is difficult to determine the annual number of new lupus cases, or the number of individuals who die from health complications of the disease. However, due to improved diagnosis and disease management, most people with the disease will go on to live a normal life span.
Lupus is not understood well enough to be prevented, Dr. Aragon said.
"However, when the disease develops, quality of life can be improved through flare-up prevention and early treatment," he said.
A main change for most lupus patients revolves around their daily routine.
"Lifestyle changes play a significant role in the treatment of lupus," he said. "Exposure to sunlight, certain drugs and chemicals that are known to exacerbate the disease should be avoided. Dietary changes, towards a low fat, mostly strict vegetarian, wholesome diet, may also lessen the symptoms or even induce a remission."
Standard preventive measures, including screening for related medical conditions such as (cardiovascular disease, infections, osteoporosis, and cancer) may be necessary to deal with the increased risks due to the side effects of medications.
The Lupus Research Institute, the world's leading private supporter of innovative research in lupus, recently announced Benlysta (bmumab), the first successfully tested new drug for lupus treatment in over 50 years, Dr. Aragon said.
"More research studies are being conducted in the hunt for solutions to this complex and dangerous autoimmune disease," he said.
Colors of Lupus hopes to be a big part of the solution, at least locally.
"As we grow we hope to be able to donate part of our proceeds to research," Ang said .
Grapes -- along with their leaves and sap -- have been traditional treatments in Europe for thousands of years. Grape seed extract is derived from the ground-up seeds of red wine grapes. Although fairly new to the U.S., grape seed extract is now used to treat a number of diseases.
Grape seed extract seems to be an especially valuable anti-oxidant for lupus patients. Users claim that it counteracts inflammation, decreases allergic reaction, and repairs damaged collagen (connective tissue.)
Some people get immediate results. Some take anti-oxidants for weeks before they experience improvement.
One woman with joint pain did not notice a benefit from grape seed extract until after four months of continued use, but since then has had very little pain. Grape seed extract or other anti-oxidants must be taken on a regular basis, not just when joints hurt.
There’s strong evidence that grape seed extract is beneficial for a number of cardiovascular conditions. Grape seed extract may help with a type of poor circulation (chronic venous insufficiency) and high cholesterol. Grape seed extract also reduces swelling caused by injury and helps with eye disease related to diabetes.
Many people are interested in grape seed extract because it contains antioxidants. These are substances that protect cells from damage and may help prevent many diseases. However, it’s still too early to say whether the antioxidant properties of grape seed extract really benefit people. Researchers are studying grape seed extract to see if it might lower the risks of some cancers. For now, the evidence is not clear.
Grape seed extract has been studied for use in many other conditions -- ranging from PMS to skin damage to wound healing --
Bovine colostrum is also used for boosting the immune system, healing injuries, repairing nervous system damage, improving mood and sense of well being, slowing and reversing aging, and as an agent for killing bacteria and fungus.
Colostrum knocks out intestinal inflammation. Colostrum (although not milk) might help protect the stomach from damage caused by anti-inflammatory drugs. It has been hypothesized that colostrum's growth factors help stimulate the stomach to regenerate.
If more individuals understood the value of colostrum for use with lupus, they might be able to avoid some of the consequences of traditional drug therapy and gain more long lasting relief from symptoms. Colostrum is helpful for the lupus patient in a number of ways:
1. It contains numerous anti-inflammatory compounds. Many individuals find colostrum more helpful than the anti-inflammatory drugs known as NSAIDS (non-steroidal anti-inflammatory drugs) for relief of joint pain and swelling.
2. Colostrum contains rejuvenating compounds which help restore the integrity of the
intestinal tract. Often the restoration of a healthy gastrointestinal tract is enough to
provide relief from the symptoms of lupus. This is due to the relationship between the
lining of the intestinal tract and autoimmune responses. A healthy intestinal lining is one
of the best protective mechanisms against infection, particularly, yeast infections and
salmonella.
3. Colostrum contains a compound known as PRP which has been found to help balance
the overactive immune response with autoimmune diseases.
4. Colostrum supports healthy levels of serotonin - the feel good hormone - thus
overcoming depression which is so common with chronic health problems.
5. Colostrum supports overall hormonal balance. Many women discover relief from
PMS and other indicators of hormonal imbalance with the use of colostrum. Recent
studies have verified a connection between the hormones and the immune system and
have identified a relationship between the female hormone, prolactin, and lupus.
Hormonal balance may play a particular role in the relief of lupus symptoms.
We may never completely understand the ways in which colostrum aids autoimmune diseases
such as lupus, but experience is a good teacher. And experience has taught me and others that colostrum can be a big part of the puzzle when it comes to helping the sufferers of lupus.
The most severe case of lupus I have ever dealt with was a young woman in her early 20's. The
disease had already destroyed her kidneys and she was undergoing regular dialysis. She also had extreme lung damage and had to use inhalers frequently. Her bowels were not functioning very well and she was losing weight rapidly. Her life expectancy was short when she began taking large amounts of “whole” colostrum. However, after several months, she was completely off dialysis and her kidneys were functioning again. She no longer needed inhalers and she was beginning to put on weight. She eventually went into complete remission and today she is
Colostrum is a milky fluid that comes from the breasts of humans, cows, and other mammals the first few days after giving birth, before true milk appears. It contains proteins, carbohydrates, fats, vitamins, minerals, and proteins (antibodies) that fight disease-causing agents such as bacteria and viruses. Antibody levels in colostrums can be 100 times higher than levels in regular cow’s milk. People originally got interested in bovine colostrum because of the high antibody levels. They thought that the antibodies might prevent intestinal infections in people, but they seem to be wrong. Some athletes use bovine colostrum to burn fat, build lean muscle, increase stamina and vitality, and improve athletic performance. Bovine colostrum is not on the banned drug list of the International Olympic Committee. Bovine colostrum is used in the rectum to treat inflammation of the colon (colitis). Researchers have created a special type of bovine colostrum called “hyperimune bovine colostrum.” This special colostrum is produced by cows that have received vaccinations against specific disease-causing organisms. The vaccinations cause the cows to develop antibodies to fight those specific organisms. The antibodies pass into the colostrum. Hyperimmune bovine colostrum has been used in clinical trials for treating AIDS-related diarrhea, diarrhea associated with graft versus host disease following bone marrow transplant, and rotavirus diarrhea in children.
