Man in the mirror
Michael Jackson put human face on autoimmune disease lupus
By MARILYN LINTON
"When we heard that the Man In The Mirror had the "disease with a thousand faces," many of us were in the dark about the condition that Michael Jackson had been diagnosed with in 1986.
In a recent CNN interview, Jackson's dermatologist, Dr. Arnie Klein, said that he knew when the pop star first walked into his office that he had lupus erythematosus.
One way the autoimmune disease broadcasts itself is by a classic butterfly rash that spreads across the upper cheeks and bridge of the nose. (In 1851, a French dermatologist described the rash as wolf-like, hence the name lupus.)
Jackson, said the Beverley Hills celebrity doc, had the butterfly rash on his face.
Given that there are approximately 50,000 Canadians living with lupus, it's not unusual to know or hear of someone with the disease, says Catherine Madden, executive director of Lupus Canada.
Raising awareness and educating people about the disease are among the organization's goals. Lupus is complex and called "the disease with a thousand faces" because each person's experience of being diagnosed, treated and living with lupus will be very different.
It can attack the skin, the joints, muscles, lungs, hearts, kidneys, brain or neurological system.
According to www.lupuscanada.org the disease (it affects women between the ages of 15 and 45 eight times more than men) is a chronic one whose symptoms can include extreme fatigue, joint pain, mouth ulcers, chest pain and hair loss. Klein confirmed that Jackson was virtually bald at the top front of his head.
Lupus sufferers are also prone to be super-sensitive under the sun, which is why Jackson was always under an umbrella when there wasn't a cloud in the sky.
In lupus, the immune system is unable to tell the difference between intruders and the body's own tissues. Trying to do its job, it attacks parts of the body, causing inflammation and creating the various symptoms -- some of them so debilitating that patients require hospitalization.
Lupus attacks are called "flare-ups" and in their most threatening form, they can seriously damage the kidneys and other organs.
The goal in treatment is to reduce inflammation and alleviate symptoms. To do this there's a whole arsenal of drugs available from mild anti-inflammatory meds to potent steroids.
Serious flare-ups are often followed by a chronic phase with less severe symptoms and, possibly, remission. Preventive measures help to reduce the risk of flare-ups, so patients need to pace themselves, control stress, eat well, exercise regularly, and promptly recognize and treat potential flare-ups.
It's because the disease takes so many forms that it's also difficult to diagnose. It's not unusual, says Madden, for people to take four to five years before finally getting a diagnosis (usually from a rheumatologist). Confirmation for lupus requires many things, including meeting several symptom criteria and a positive antinuclear antibody (ANA) blood test.
"Awareness and research in lupus is underfunded," Madden says of the "orphan" disease for which there is no cure. "One of Lupus Canada's goals is to get Canadians diagnosed sooner so that there's less damage to their bodies and they can learn how to live well with their lupus."
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Symptoms
In general, lupus signs and symptoms may include:
- Butterfly-shaped rash (malar rash) on the face that covers the cheeks and bridge of the nose
- Fatigue
- Fever
- Weight loss or gain
- Joint pain, stiffness and swelling
- Skin lesions that appear or worsen with sun exposure
- Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud's phenomenon)
- Mouth sores
- Hair loss (alopecia)
- Shortness of breath
- Chest pain
- Dry eyes
- Easy bruising
- Anxiety
- Depression
- Memory loss
Source: Mayo Clinic
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The Thousand Faces of Lupus
There are several celebrities diagnosed with, or rumored to have, lupus. They include former Philippine president Ferdinand Marcos, musician Seal, Hollywood St. Elmo's Fire producer Lauren Shuler Donner, Savannah fiction writer Flannery O'Connor (who died from its complications), Trick Daddy and Anna Nicole Smith. "
Wednesday, July 22, 2009
Ottawa Sun Article: Michael Jackson and Lupus
Monday, July 13, 2009
Sun Protection
People with Lupus must be careful in the sun all year round but especially in the summer months. It is imperative that people with Lupus take every precaution to protect themselves.
The American Lupus Foundation has compiled a great list of resources:
- Participate in a Lupus and your skin webchat
-Learn more about your skin and Lupus
-Read archived articles on Lupus and suncare from past Lupus Now issues
-Join message boards on the topic of Lupus and sun care
- Ask the experts on your skin and Lupus
Click on the picture to go to these resources.
Patient Voices: Lupus MUST READ
The New York Times has a really great article about a diverse group of patients all with Lupus that has the actual people tell their story. There is a 16 year old girl, a man (whom are strongly misrepresented when talking about Lupus), and there are different ethnicities all with compelling stories.
Click the link in the following article from the American Lupus Foundation to go to the site.
The New York Times website Patient Voices Series Features People Affected by Lupus
July 9, 2009
"As part of its Patient Voices series, The New York Times website is featuring the stories of people from across the country who are affected by lupus. Using audio interviews and photos, Patient Voices seeks to give a glimpse into the life of someone living with lupus. The individuals featured are as diverse as the disease itself, and include actress/model and Lupus Foundation of America (LFA) national spokesperson Tomiko Fraser Hines, who lost her sister to lupus, and Jeremy Margolis, who recently suffered a heart attack resulting from lupus complications.The LFA would like to thank the participants for having the courage to share their stories, and believes they will not only help raise awareness of lupus, but will educate the public about a disease that is often misunderstood and under recognized . The LFA would also like to extend its gratitude to The New York Times for helping to increase awareness of lupus, an unpredictable and potentially fatal disease that affects an estimated 1.5 million Americans and at least five million people worldwide."
Visit The New York Times website and listen to the interviews and view the pictures.
Stories of Living Well with Lupus
The Lupus Canada website has a series of personal stories on living well with Lupus. I hope this inspires you all to live your best life even with Lupus. Life is short and you have to take care of yourself first. I'm posting Maureen's story from the Lupus Canada website because I think it sheds a positive light on living with Lupus.
Maureen’s story
Living with a chronic illness – SLE – has proven to be both one of the hardest things in life to deal with. I have, however, grown as a person because of it Growing up, I didn’t get the typical colds or flu that most kids get; instead I was sick with things like mono and Bell’s palsy. I suffered migraines, terrible joint and muscle pain and would sleep for days on end. I just could not stay awake. Like many other youngsters, going to doctor after doctor, everything was related to growing pains, and as I got older, the growing pains turned to stress. No one considered that maybe, just maybe, I was sick.
My doctor finally gave in and sent me for tests. I am not sure if he did this because he thought there may actually be a possibility I was sick; if he wanted to shut me up or if he wanted to scare me by running so many tests. It turned out that the doctor got 2 out of 3 right. After many tests; x-rays, MRI’s, CT scans, blood test after blood test, sleep studies, biopsies and anything else you can think of I was both scared out of my mind – and sick.
After the many tests, I received a call from my doctor asking me to come to the office to discuss the results of my tests. I went to my appointment and at the age of 25 I was told I had “lupus”. Sadly, it became clear very quickly that my doctor at the time had little knowledge of lupus. Sitting in his office, the doctor looked down at my file and made no eye contact with me at all. His diagnosis went something like this – “You have lupus, which is strange because normally women in their 70’s and 80’s get lupus. Take these medications and a specialist will call you to make an appointment”. With that, he handed me a couple of prescriptions and walked out. I sat in the office for a few minutes waiting for him to come back and tell me what “lupus” was. Well, the doctor never came back and I did one of the worst things someone can do once being diagnosed with something. I looked on the internet! All of the research that I found said that I had about 5 years to live. Well, that was almost 4 years ago and I am not going anywhere any time soon.
In the past few years I have been through a lot. I have been diagnosed with a variety of things that all interrelate to SLE in one way or another. I have Sjogren’s, Raynauds, lupus nephritis (kidney involvement), vasculitis (CNS involvement), APS (sticky blood) and have had bouts of paracarditis and pleurisy. I live in pain and fear of the unknown. It has been a never ending learning curve, but despite the pain and things that all go along with lupus I have learned a few very important things:
- I am the most important person in my life – I need to take care of myself before I take care of everyone else around me. I am still working on this but I have improved.
- Listen to my body – if it says rest, I rest. If it says go to the doctor, I go to the doctor. If it says check my INR, I check my INR.
-I have a great support system. I have learned who my true friends are; and that those that I thought were true friends couldn’t handle me being sick.
- I have learned that lupus is not going to control my life. Lupus still has a say in how my day goes, when I need to eat, when I sleep and when I take my meds. It has let me know that I can’t sit in the sun – but if I cover up, I can spend time playing with the kids and that there are lots of fun inside things to do and lots of puddles to jump in on overcast days!
One of the most important things I have learned is that life is short – and to enjoy it. I don’t take things for granted anymore as I never know when things will change. In the mean time – as long as I remember the things that I have learned the past 4 years – I spend more time controlling lupus then it controls me. I live one day at a time, and I try to live each day as it might be the last.
Thursday, May 7, 2009
May Lupus Awareness Month !
Click Lupus Awareness to take you to the article about the Lupus Awareness Ad Council PSA that is being displayed in Rockefeller Centre until May 31.
Monday, April 20, 2009
The Arthritis Society of Ontario lists Lupus as a type of Arthritis it provides the following information on Lupus:
AdvoKit Canada
AdvoKit is a Support Resource provided on the Lupus Canada Website. It outlines support and services that people living with Lupus need, shows how they can advocate for them selves or how others can advocate on their behalf, Outlines how they can take charge of their lives and their health, and teaches them about their rights and entitlements.
Could I have Lupus? Real Women. Real Stories. Real Hope
Please Click on this link to take you to this great website by the U.S Department of Health and Human Services. You can get great facts on Lupus, participate in discussion forums, read women's Lupus diaries and Create your own to share your story.
Tuesday, February 17, 2009
Basics for Better Living Continued
Don't Smoke!
-Tobacco smoke contains an aromatic amine, hydrazine, which can cause flares of cutaneous lupus.
-Smoking worsens the symptoms of Raynaud's phenomenon (fingers and/or toes turn blue or white when cold)
-Smoking impairs circulation to a greater extent in people with lupus than in otherwise healthy people.
Develop Preventive Coping Strategies
Don't Let The Weather "Psych You Out"
People with lupus are sensitive to changes in barometric pressure. If the weather goes from hot to cold or wet to dry, you might be a bit achier. This will pass. The best climate for lupus patients is one with the fewest changes in the barometer.
Control Fatigue
Fatigue in lupus is caused by inflammation, anemia (deficiency in the oxygen-carrying materials in the blood), and chemicals known as cytokines, among other sources. In order to help reduce your fatigue:
-Pace yourself with periods of activity alternating with periods of rest.
-Remember: Patients who stay in bed all day only become weaker.
-On the other hand, supermoms and dads who put in a 20-hour day without a break can cause their disease to flare.
Develop A Good Doctor-Patient Relationship
It's very important that your physician is accessible and will take the time to discuss disease management issues. For instance:
-Will your physician tell you if pregnancy is advisable or not, whether or not to take birth control pills, which antibiotics you need to be careful with?
-Will your physician write a jury duty letter or fill out a disability form if needed?
In return, it's vital that you, as the patient:
-prepare for and keep your appointments
-be honest with your physician
-take medication as prescribed
-respect their time.
It would also be helpful to plan ahead and decide what to do in case of an emergency.
Monday, January 26, 2009
Basics for Better Living Continued
When You Hurt, Apply Heat
- Moist heat soothes painful joints much better than dry heat.
- Soaking in a hot tub, sauna, jacuzzi or taking a hot shower is useful.
- Ice or cold applications, are advisable only for acute strains or injuries during the first 36 hours after injury
General Conditioning Exercises
You can help prevent muscle atrophy, or wasting, and lower your risk for developing thin bones (osteoporosis) with these types of activities:
walking
swimming
low impact aerobics
bicycling
However, if your joints are swollen or you have fibromyalgia, be careful before doing a lot of weight lifting, rowing, high impact aerobics, or engaging in tennis, bowling or golf.
If exercise tires you easily, pace yourself with frequent rest periods.
Consult A Rehabilitation Specialist
Physical therapists assist patients with:
muscle strengthening programs
exercises
gait training.
Occupational therapists help to:
lower stresses to painful areas
evaluate workstations (especially those with a computer) to ensure proper body mechanics
recommend a variety of assistive devices.
Vocational rehabilitation counselors may train you for a job that:
involves less sun exposure
puts less emphasis on repetitive motions involving an inflamed hand or other parts of the body.
Basics for Better Living Continued
Systemic Lupus Erythematosus (SLE)
Seventy percent of people with lupus have systemic lupus. About half have organ-threatening disease:
heart
lung
kidney
liver
serious blood involvement
and half have non-organ threatening disease:
rash
fatigue
fever
aching, and/or pain on taking a deep breath
normal urinalysis, EKG, and chest x-ray.
Undifferentiated Connective Tissue Disease (UCTD)
Finally, many people with early lupus-like symptoms don't meet the ACR criteria but have an undifferentiated connective tissue disease process. Studies have shown that, while many of these people will develop SLE over time, others will develop rheumatoid arthritis, have mild persistent symptoms, or find that the process just disappears.
How Can You Help Yourself?
Physical Measures
Be Careful In The Sun
Two-thirds of the people with lupus have problems with ultraviolet A and B (UVA and UVB) radiation from the sun. If you are going to be outside for more than five minutes, use a sunscreen. Choose a sunscreen that has a sun protection factor (SPF) of at least 15
Make sure it blocks both UVA and UVB rays. UVB sun exposure is greatest at midday, so do your outdoor activities earlier in the morning, late in the afternoon, or in the evening and wear protective clothing. Ultraviolet radiation is also greater at higher altitudes. The UV exposure at sea level in one hour is the same as the exposure in five minutes at an altitude of one mile like in Denver, Mexico City, or on a ski slope.
Diet
People with lupus should eat a nutritious, well-balanced diet.
There are some suggestions that fish, or specifically eicosopentanioc acid in fish oil, might have modest anti-inflammatory properties. The results of double-blind controlled studies showed that eating the equivalent of two fish meals a week clearly helps rheumatoid arthritis pain.
An amino acid, L-canavanine, is found in alfalfa sprouts and can activate the immune system and increase inflammation in lupus patients. Other foods in the legume family have only a fraction of the L-canavanine that sprouts do and are safe to eat. Lupus patients taking corticosteroids should limit their sugar and salt intake.
Basics for Better Living
Although there is no "cure" for lupus, you can make lifestyle adjustments that help fight the disease and give you an improved sense of well being. Many of these don't require spending money or seeing a health care provider. After all, we've known for years that the "head bone" is connected to the "lupus bone," and that stress and difficulty in coping are associated more with disease flares. In this pamphlet, we offer you ways to do things to help yourself.
Make Sure It's Really Lupus
Even though 10 million Americans have a positive antinuclear antibody (ANA), only one million have systemic lupus erythematosus (SLE). A recent survey found that only one-third of patients who had been told they have lupus actually fulfill the American College of Rheumatology (ACR) definition for the disorder.
Positive ANAs, fatigue, aching and other lupus-related symptoms can be found among individuals with:
thyroid disease,
cancer,
recent infections (especially viral),
fibromyalgia,
rheumatoid arthritis,
pregnancy, and
multiple sclerosis,
among other illnesses.
Has your diagnosis of lupus given by your primary care physician, been confirmed by a Board Certified Rheumatologist or other recognized lupus specialist? If your disease has been confirmed as being lupus, read on.
What Kind Of Lupus Do You Have?
Chronic cutaneous lupus erythematosus (CCLE)
CCLE is a skin disorder. The skin precautions discussed later in the brochure are important, but fewer than 20 percent of these patients will ever develop systemic lupus, and most generally feel well.
Drug-induced lupus erythematosus (DILE or DLE)
DILE can be brought on by more than 70 different prescription drugs, but symptoms disappears within days to months of the drug's discontinuation.
Mixed Connective Tissue Disease (MCTD)
Some patients fulfill criteria for systemic lupus, but also meet the definitions for rheumatoid arthritis, scleroderma, or polymyositis. They have mixed connective tissue disease if anti-RNP is present.
Thursday, January 15, 2009
Zero in 50
Zero in 50. Thursday, November, 20, 2008 marked an unfortunate anniversary. It was 50 years ago the U.S. Food and Drug Administration (FDA) last approved a drug to specifically treat lupus.
