lupus backgrounder nov 5-2012

7/30/2019 Lupus Backgrounder Nov 5-2012

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I know today is Monday and you probably assume its going to suck.

But according to statistics, there will be over 10,000 childbirths,

5,000 weddings and 42 million hugs occurring today throughoutNorth America. Also, there will be at least 4 people that win

multi-million dollar lotteries, and 600 people who get a promotion at

work. There will also be 600 dogs adopted, 35,000 balloons sold,and 800,000 Skittles eaten. Plus the words I love you will be

said over 9 million times.

So again, I know today is Monday and you assume its probablygonna suck, but just smile, because according to statistics, it

should actually be a really nice day.


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What is Lupus?


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What is Lupus?

It is an acute chronic autoimmune disease

The immune system over-activates and misfires

It can target any tissue or organ

It can lead to organ failure & death


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Who Gets Lupus?

Anyone can get it

Known statistics say it affects about 50,000Canadians. We suspect its significantly higher

15% develop lupus as children

Between ages of 15 to 45, 80% are women

No gender bias in children & those over 45

Those with Asian, First Nations, Hispanic, Indian,African racial backgrounds are more susceptible


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Lupus Lottery

Q. Who will get Lupus?

Q. Why do you get Lupus?

A. No one knows

While not hereditary, there is a tendency when

others in your family have auto immune diseases

There may be a link between lupus and hormones

There may be some environmental causes


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Lupus Lottery Prizes

It is very difficult to diagnose

Lupus is very complex and involves multi-organs

Most Family Physicians get absolutely no trainingon Lupus

Rheumatologists (the specialist for our disease)get 20 minutes training on Lupus

So it takes far too long too reach a diagnosis


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Before symptoms specific to Lupus occur

Flu-like symptoms may appear along with severe

fatigue and anaemia. Other problems often occur such

as unexplained sudden weight gain or loss, headaches,hair loss, hives, high blood pressure, or changes in the

colour of fingers in the cold.


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Lupus Symptoms

Prolonged or extreme fatigue, debilitating exhaustion

Cognitive Impairment (lupus fog)

Swollen or achy joints

Skin rashes

Anemia

Kidney involvement

Hair loss Seizures / psychosis

Mouth or nose ulcers

A butterfly shaped rash across the cheeks and nose

Sun or light sensitivity (photosensitivity)

Frequent fevers of more than 100 f Pain in the chest on deep breathing (pleurisy)

Butterfly-shaped rash across the cheek and nose

Abnormal blood clotting problems

Raynauds Phenomenon (fingers turning white and/or

blue in the cold)


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My Story

Readers Digest Version


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Yes dear,

her House IS Messy

But she has Lupus,

Whats YOUR Excuse?


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Lupus Bonus Prizes Lupus flares are unpredictable and random

Hospitalization is common, health system costs are very high People with Lupus used to have only a 10 year survival rate.

This HAS improved.

Lupus patients WILL have Cardiac involvement of some kind

Lupus increases the risk of Coronary Heart Disease 10x onaverage and a whopping 50x in the 35-45 year old age group

11-54% of lupus patients have inflammation of thepericardium

40% of lupus patients ages 40-45 have established carotidartery plaque

People with Lupus have a 30% chance of getting osteoporosis

Lupus patients have an increased risk of various cancers


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Treating Lupus

There is no cure for lupus

Current treatments have serious side effects

chemotherapy drugs

steroids

immune suppressants

After 50 years without one, a lupus specific drug

has been developed.

it only helps up to 2% of lupus patients

It is not covered by health plans and costs about$30,000 to administer


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Types of Lupus

There are many kinds of lupus. The mostcommon type, systemic lupus erythematosus,affects many parts of the body. Other types oflupus are:

Discoid lupus erythematosuscauses a skin rash

that doesn't go away

Subacute cutaneous lupus erythematosuscauses skin sores on parts of the body exposedto sun

Drug-induced lupuscan be caused bymedications

Neonatal lupusa rare type of lupus that affectsnewborns


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In BC it takes from 8 to 10 years to diagnose lupus

Treatment is very expensive

Numerous specialists are needed

Expensive drugs are used

Hospitalizations frequently occur


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Lupus Society

Our Mission

to support advances in research

and treatments

to create public awareness

to provide education and supportto people affected by lupus


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Lupus Society

Our Vision

That early diagnosis and optimal

treatment will be available toeveryone with lupus

That the public at large will be

aware of lupus

To ensure community basedsupport networks and services


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Programs & Services

Awareness & Education

Medical Community

Patients

Newly Diagnosed Program

Peer Support

General Public

Fact sheets

Information packages, books, videos

Annual Lupus Wellness & Education Symposium

world renowned experts

video conferenced throughout BC


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Programs & Services

Lupus Research Funding

research scholarship

clinical support

research project funding

Lupus Lighthouse newsletter

Support Network

30 Provincial Contacts

9 Support Groups

lupus backgrounder nov 5-2012

Documents