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.
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.