Ottawa Sun Article: Michael Jackson and Lupus

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."
---
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
---
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. "

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.