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Sad news.
Old 01-06-2008, 11:41 PM   #1
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Sad news.

My mother told me yesterday that my beloved 15-year-old niece has been diagnosed with Lupus.

I was initially devastated to hear this, as I love her very much. But in looking at various websites it seems that the prognosis varies widely according to the individual. Further, they seem to have made great strides in treating this in recent years. I'm going to be hopeful for the moment, and see how I can support them as they learn more.

Since my brother and sister-in-law are dealing with the doctors and Julia's emotional needs, I've started to mull the long-term picture.

From what I gather, this is a chronic disease that she'll be dealing with for the rest of her life.

What does this mean for her / them in terms of medical care? Will she be thrown off her father's policy at when she turns 21? (He's a cop and has a good policy, but will it last?) Are there categories of disability, etc. which allow an adult child to remain covered? Are there gov't agencies (medicare, medicaid, medical, etc.) that step in at a certain level of disability?

And if not...

I'm thinking that if there is no fallback position the larger family might want to start talking about creating a fund to generate healthcare payments (!!!). I have no children of my own and could chip in, but as everyone here knows, the sooner we start to save, the better off we'll be.

I hope this request for information draws a blank -- in other words, I hope nobody out there has been in a position like this -- but if there is any wisdom out there, I'd be grateful to hear it.
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Old 01-07-2008, 12:39 AM   #2
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Sorry to hear of your niece's diagnosis. I only have limited knowledge based on a close friend's wife having had Lupus. Sadly she died of breast cancer several years ago. To the best of my knowledge, the breast cancer was not directly related to the Lupus.

She had certain physical limitations, but in her case was able to lead a relatively normal life, including raising a family and working for a few years.

Ref her father's family hospitalization plan...... Most family plans drop children when they turn 21 unless they are students, regardless of health issues. Only the details of her dad's policy will reveal the particulars in that case. He should review them. She may need to be part of a state plan after that. Perhaps Martha will comment.

I think there's room for optimism that your neice still has an opportunity for a wonderful life. Good luck.
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Old 01-07-2008, 01:04 AM   #3
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Very sorry to hear about your niece. As Youbet said, I think many people with this do quite well so there is good reason for optimism. Also, I am impressed by your reaction and your interest in doing something to help.

A woman named Sheryl who posts on this board was diagnosed with Lupus within the past couple of years.

Here is a link where she discusses her diagnosis and some of her considerations.

Regarding the insurance issue, by the time she graduates from college things may be better on this front. Also, she may be able to secure employment right out of college. Additionally, there is a company which markets an insurance policy that students can buy that continues as long as you pay the premium, so it does not end with graduation. If you are interested in this I can dig up any info I still may have in my files. Last but not least is the state pool for individual insurance. The attractiveness of this varies from state to state.

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Old 01-07-2008, 07:40 AM   #4
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I hope and think that by the time she reaches age 21 there will be some kind of safety net in place to at least assure that she has access to health coverage (though paying the premiums may be another challenge). Lupus takes many forms and is quite unpredictalbe -- that is, she may do very well for many years.

Sorry to hear of this, but it is surprising and inspiring how young people can rise to the occasion. Keep us posted on her progress.

Best wishes
San Francisco Area
ESR'd March 2010. FIRE'd January 2011.

As if you didn't know..If the above message contains medical content, it's NOT intended as advice, and may not be accurate, applicable or sufficient. Don't rely on it for any purpose. Consult your own doctor for all medical advice.
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Old 01-07-2008, 08:10 AM   #5
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A growing number of states are requiring health insurance plans to cover unmarried children (who don't have children of their own) until they are age 25 whether or not they are in school.

No more lawyer stuff, no more political stuff, so no more CYA

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Old 01-07-2008, 08:21 AM   #6
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Sorry to hear about your niece .My Aunt had Lupus for over 30 years and did fine .As Rich said Lupus takes many forms .
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Old 01-07-2008, 01:51 PM   #7
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and i was concerned just about developing a pre-existing condition just while i was on cobra. i hadn't even considered undergoing such a circumstance as your niece. best of luck to your family regarding both their insurance issue & your niece's health.
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Old 01-07-2008, 07:08 PM   #8
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News like this sure gives the healthcare crisis a personal face. How do you afford to keep your policy paid for / when you're too sick to work? What if you become sick before you even have an education or a job that would lead to unemployment?

Having gone without healthcare early in my life and having gotten by with catastrophic coverage during times of unemployment, I can't imagine what someone with a chronic disease has to do to insure adequate care. I guess we'll find out in the coming months and years.

That said, the good news is that there are wonderful folks, like those on this board, to send kind words and thoughts and help where they can.

Thanks, everyone, for the good wishes for my niece.
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Old 01-07-2008, 08:04 PM   #9
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It sounds like your family is a supportive one, and certainly your niece has a very caring aunt, and that support is very important when a family faces any crisis. I don't have any information to add except to offer my thoughts and prayers for you all.

You might want to visit the Lupus Foundation of America website for support info and more: Lupus Foundation of America
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Old 01-07-2008, 08:08 PM   #10
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My cousin has it and has led a fairly normal life, she's a nurse and has two teenage kids. She is very conscious of not over-exerting herself, and watching her energy level. I think that it does affect folks differently and now that she is in her early 40s, it is more of a factor than when she was younger.
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Old 01-09-2008, 03:12 AM   #11
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My wife's only brother has had a mild form of Lupus most of his adult life (mostly skin related). He's 54 now, doing great and no real insurance issues as far as I know. Best of luck to your niece.
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Old 01-09-2008, 02:12 PM   #12
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No lupus, but my best friend has Crohn's Disease, another chronic condition. She had to go without during college and now has to pick jobs based on health insurance availability. Your niece will have to probably due the same thing unless there is guaranteed coverage in your state.
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