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Discussion Starter #1
Hi Everyone,

I am getting interviewed from a local daily newspaper. I am quite nervous about it.
They are going to interview me about having SLE.

I am been trying to gather my thoughts on what to say. I want to hit the important parts of having lupus. Like we need new meds, we don't look sick on the outside but feel rotten on the inside. My brain is drawing a blank.:unsure:

If you guys could help me with some ideas, it would be greatly appreciated. I know this is a good way of getting lupus made known better, and I don't want to blow it.:ermm:

Thank you for your replies.
:grouphug2:

Lyn





 

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Hi Lyn,

Thank you for representing us. You will do just great. I am sure the interviewer will have some leading questions to help you out but it is always best to be prepared.

Off the top of my head I would say it is chronic, no known cause, and no cure. Auto-antibodies attack the bodies own tissues. It can affect skin, joints, heart, lung, kidneys, blood and brain. It is only treated symptomatically since no new drugs have been approved in over 30 years. Each person can be affected in a different way. The disease and drug side effects force you to make lifestyle changes. Naturally they will want to know some of the symptoms also. With the multitude of symptoms you have you will not be at a loss to think of any.

Good luck,
Lazylegs
 

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You'll do a great job. I'm sure of that! The interviewer will very likely have good questions for you already prepared and the interview should go well.

I would want people to know that it is not contagious ;)

Send me the link if the article goes online please! I'd love to read it.
 

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Lyn, that's great! I'm sure you will be a great representative of us lupies. I hope you mention the extreme fatigue, that most people don't understand. Yes, please post the article. I'm sure you'll be great! :) Cathy
 

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Hi Lyn :)

Congratulations on getting the interview. You will do just fine. I think if it were me I would concentrate on explaining the disease to the ordinary person out there as I think there is such a lack of understanding about what it is.

I would say that it is basically a condition that can be described as a self allergy - in other words where the body turns against itself. Perhaps give an example of when the ordinary person gets a cold or virus then their internal 'army' gears itself up to fight off the invader. Usually a battle goes on inside the body and one's own army ends up fighting off the invader and then stands down its army to wait on the next atack.

With Lupus however our bodies lose the ability to control our internal army so once they get going they forget to switch off and end up attacking normal, healthy tissue with the result that they can attack just about anywhere in the body. Explain the fact that it is a systemic illness that can affect any part of our systems - hence the fact that it can be so different for everyone.

Maybe also you might be confident enough to explain some of the medications and how they work, e.g. the immune suppressants that are designed to suppress or dampen our over-active immune system. The benefits being that they do help to calm down over activity of Lupus but the down side is that you have to live with a compromised immune system and are more open to infection. etc.

Of course most interviewers will want your personal story and how it affects you and thats probably where you will be most comfortable. I would say though that they will start with an open question something along the lines of 'so tell me, what is Lupus'. It would be good to have a few paragraphs prepared to get you settled into the interview. Make lots of notes so you can refer to them and this will make you feel more confident.

I also agree that explaining the fatigue would go a long way to creating an understanding of this disease.

The very best of luck and let us know how it goes.

Luv n stuff
Joan:rose:
 

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Hi Lyn i know you will do just fine, all the best, please let us resd it when published

luv Lin xxxxxxxxxxxx
 

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Discussion Starter #7
Hi,

I had the interview this afternoon. I think it went really well.:)

I had written down all your comments, and printed off what lupus was.
She said she dated a guy who had lupus, so she had a pretty good idea what it was all about. I told her about the fatigue how bad that is, the pain we experience everyday.

She asked me if I thought Lupus was known by the public. I said, no and she agreed with me.:)
I asked her if she knew that babies can be born with lupus. I think she was surprised by that.

She took all my notes and I let her take my copy of the "Lupus Now" magazine. I told her I go to a message board and I have friends all over the world.:bigsmile:

I forgot to ask when it was going to be published, but I know the deadline for her is this coming Monday.

I hope this helps with lupus awareness.

Take care,
Lyn

 

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Lyn

That is so terrifec that you got the oppurtunity to do something like an interview for lupus.I kow i would not do well with something like that because when i am put on the spot talking to soemone about lupus i can never think how i want to answer thet question:sad:.Well i am sure you did very well with the interview and i so cannot wait to read it :).Please let us know ehn you get the copy.looking forward to reading it :)

Tammy
 

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Heh Lyn, what an honour to get interviewed. I can imagine how excited yet nervous you must feel. There is so much information that you could share with the readers but you don't want to overwhelm them either. I think it might be best to write out what you are thinking on notecards. It might be interesting, in order to get across to the reader the severity yet difficulty of living with this illness by maybe drawing a timeline of how it has effected you. You know, beginning problems to diagnosis. It might also be easy for the reader to follow if you did a kind of a day in the life. When you get up to when you go to bed and what your day entails. Just a few thoughts. Hope you are surviving and drying out up there Lyn!

Nancy
 

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Lyn,
Yeah for you!!!!! :cheer2: I am so proud and cannot wait to be able to read the article. Thank you for being a voice and I KNOW you did a great job:)

Hugs,
Becca

ps thank you for mentioning your friends:wink2:
 

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Discussion Starter #11
The interview was published in today's paper. I have blanked out personal information on the article.

Lyn's life changed the day she learned she had a chronic autoimmune disease called lupus.

Her immune system cannot tell the difference between foreign substances and its own cells and tissues. The immune system produces antibodies directed against itself that result in inflammation, pain and damage to various parts of the body.

It can be life-threatening.

“I’m kind of fortunate,” the 51-year-old homemaker said, at her rural home. “Sometimes it takes years to get diagnosed.”

Lyn was diagnosed in November 2004 after telling her physician about painful aching in her arms and joints.

“I was so tired,” she said. “I just didn’t feel good.”

A week later, the doctor confirmed Lyn had lupus, which also afflicts her younger brother, Craig of , Colo.

The possible role of genetics in lupus is the topic of a forthcoming issue of “Lupus Now,” a magazine of the Lupus Foundation of America. Lyn and her 49-year-old brother may be among the people featured in the article, set to publish sometime in 2009, Lyn said.

Shirley , 73, was diagnosed years ago, she said.

“I was not young when I got it,” she said.

As with Lyn, Shriley had been feeling “terribly sore and tired. I ached all over. I just didn’t feel good. I had no pep.”

Eventually she was referred to a Mason City rheumatologist who diagnosed it.

Shriley considers herself fortunate because she’d doing pretty well, aside for getting sore and feeling tired a lot. “If you overdo it, you pay for it,” she said.

There was a time when the disease attacked her lungs and heart, causing fluid build-up around those organs, Shirley said.

“That was a difficult time. Since then, I have not had severe problems. The doctor thinks I’m doing really well.”

She takes methotrexate, an immunosuppressive medication that controls inflammation and suppresses the overactive immune system.

Lyn, on the other hand, has congestive heart failure. She has chronic joint pain, thyroid problems and suffers from Raynaud’s phenomenon — a coldness of the hands. Her skin and eyes are extremely sun-sensitive.

“You run out of gas and have to sit down or lie down or you’re going to fall down into a heap,” she said.

Her doctor has prescribed an antimalarial medication called Plaquenil to protect against ultraviolet light, improve skin lesions and help lower the dosage of other drugs. She also takes an anti-inflammatory prescription drug.

“You hope the medicines keep it from getting any worse.”

She occasionally takes prednisone, a steroid, to decrease swelling, warmth, tenderness and pain. The side effects of prednisone are undesirable, however, and include weight gain and insomnia, Lyn said.



Then this next part was in a side bar along side the article.

About lupus


• Lupus is a chronic disease for which there is no cure.

• It typically affects the skin, joints, heart, lungs, kidneys, blood and brain.

• The Lupus Foundation of America estimates between 1.5 to 2 million Americans have a form of lupus, but the actual number may be higher.

• Studies suggest that more than 16,000 Americans develop lupus each year.

• More than 90 percent of people with lupus are women.

• Symptoms and diagnoses occur most often when women are between the ages of 15 and 45.

• Lupus is treated symptomatically.

• No new drugs have been approved for lupus in more than 30 years.

— Source: Lupus Foundation of America
 

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Hi Lyn,

Thank you, so much for representing those of us with this disease.

Your interview, and article sounds all very informative, and thorough. :)

I will get that issue..for sure!

I am so proud of you, friend! :):)

Love,
Sandy
 

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Hi Lyn,
Well done you :hug: you should be very proud of yourslf.
Is quite hard to do something like that and it looks like you did a really brilliant job. :)
Sorry i didn' repy berfore. I 've been having technicle problems.

Tak Care

Cassie :hug:
 

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I knew you would do great !

I look forward to reading your article if you can post on here !
 

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Discussion Starter #15
Paula,

I did post it, it is 3 messages from yours.:wink2:

Take care,
Lyn
 

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Hi Lyn

Wellit looks like you did a great job:)with the interview as i knew you would.I am glad it is over for you but wow to be able to do that kind of interview is awesome really is.I am so proud of you my friend:)You should be so proud of yourself young lady:p.

Tammy
 

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Well done Lyn! A very good article.
Hugs
Clare
 
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