Tuesday, August 16, 2011

I know what you're saying,

In response to some comments on my last post:

I know what you're saying, but studies like these HAVE been done and finished years and years ago. Physicians, parent advocates and those who advocate for children with special healthcare needs have been talking about this stuff for decades -- and have quantified it as well. You can google mental health statistics for siblings of those with epilepsy and find pretty grim information dating back decades -- statistics that show depression, mental health issues, even increased rates of suicide in boys.  I sat on the board of a non-profit that worked toward a cure for epilepsy and pushed for funding a study that helped siblings and mothers of children with epilepsy. The physicians on the board basically laughed it off the table. I think that partly speaks to the understanding of mental health issues in our culture and partly to the entrenched, rigid ways of the western medical world.

Interestingly, epilepsy and its effect on families is one of the most poorly understood and funded of all diseases -- for a myriad of reasons.

I don't hold any hope that money will EVER be allocated for families of children with special needs -- as we speak, any money that has been allocated is not just dribbling but actually gushing away. Obvious studies like this one will probably only serve to affirm what most of us feel -- and that's important. I doubt that they will be able to be used, though, for anything other than increased awareness. And while that's important, it's overwhelming to those of us who know it to be obvious. 


  1. Good points, as always. Awareness is definitely important, but maddening that it's just a drop in the bucket, a formality, really. At least sometimes it feels that way.

  2. You're right and I also doubt that money will ever be allocated to help parents and siblings caring for disabled children. No money, but much advice: "Get on with your life."; "Deal with it!"; "Get over it!"; "You need more help."; "You need to get away."...advice is abundant and free and very unhelpful!

  3. "...and pushed for funding a study that helped siblings and mothers of children with epilepsy."


  4. Single Dad -- I didn't propose the study and was only reviewing it, but if it were my study, I would have included fathers.

  5. For the sake of hope: I read an article on philanthropy yesterday that investigated the new face of American giving centered around causes that people are intimately connected with. They highlighted the fact that rich people with personal connections to certain illnesses tend to start foundations to help those affected. Perhaps some billionaire with a child/nephew/niece with epilepsy will step up. (On another happy note, it seems that Americans are one of the top three most generous citizens of the world when it comes to giving of their money for causes they believe in).

    For a pleasant thought: I retweeted an article I found this morning online about a little boy whose family was trying to raise money for an epilepsy service dog. The boy wrote a book and sold copies of it to raise money for his dog and when people found out about the need, they donated more than enough money to cover the cost of the service animal and all the book sale money is now icing on the cake.

    As always, thanks for your clear, compassionate thoughts, Elizabeth.



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