Thursday, June 27, 2013

Lack of understanding around chronic health conditions can be dangerous

Especially in the wrong hands.

I've dealt with unhelpful advice - which isn't dangerous, but more 'tedius' than hurtful.

I've dealt with massive medical debt, again, not dangerous.... but over $50,000 in debt obtained during the first three years of my illness meant that I did NOT immediately seek medical care for years afterwards. I just couldn't afford it. Risky, yes. But I was already on the verge of bankruptcy and backpedaling as fast as I could.

I've dealt with family and friends trying to shame me about the situation I was in. Again, not dangerous - but ultimately very painful emotionally. They criticized my housekeeping. Good lord, I was just fighting to survive. If you don't think it's clean enough (it wasn't) then why not just help. Admittedly, some of them DID help. Still others helped, then didn't understand why it would get messy again... well, it's not like I was getting any better (at least not then)... so, of course, my energies were tied up with simply trying to feed and clothe my family... that's as far as I got for many, many years. Note: I broke off contact with everyone that continued to try to shame me into action after multiple attempt to explain my health condition prevented me from doing what they thought I should be able to do.

But, I've never even imagined that someone could do to Karina  in Denmark, what they are doing to her.

They removed her from her family who was providing for her, taking good care of her and helping her out (more than most of my family ever did) and institutionalized her and are FORCING her to undergo experimental treatment for ME/CFS (chronic fatigue syndrome for those in the US).  The treatment they are forcing her to undertake has had a paper published after attempting treatment on mildly ill patients that has been proven to have several unsubstantiated claims (i.e., they 'claim' that x percent improved after treatment - but to be classified as improved, their scores averaged LOWER than the scores that were required to be admitted to the test).  This treatment has NEVER been tested on someone as ill as Karina.

The treatment requires physical activity EVEN THOUGH there is documented evidence of the fact that one of the critical diagnostic tools for ME/CFS is PEM (post-exertional malaise). What is that, you ask? It's where physical or mental activity makes you WORSE. In fact, time and again, folks that develop this condition and are in the worst shape? Are the ones that tried to push through the fatigue and continue to be active even though their body was signalling fatigue - to slow down and rest.

Her parents are forbidden from visiting her UNLESS they agree to support the forced treatment that Karina is receiving. The nurses have reported that Karina is down to primarily one word answers to most questions - Yes and No.... except for ONE sentence that she has managed to gain the strength enough to express - repeating it as they force her through the activities "YOU ARE KILLING ME".

Since when does a person have to go through experimental medical treatment without a choice? She was removed from her family where she was LESS ILL and forced into this situation. She's being forced through the treatment. Even after trying to convince them to stop, they continue. Her civil liberties are not to be taken away simply because people don't understand her medical condition. She should have the right to chose where she lives (as long as it's healthy and there is someone there to take care of her) and what kind of medical treatment she chooses for herself. It's an atrocity.

Please, learn about this, spread the news... and help raise awareness of the situation. There's a group on facebook fighting for justice for Karina....

There's a letter writing campaign:

And there are petitions.

Please help!


Holly Hill said...

Thank you for sharing information about Karina Hansen! It is a tragic situation. I pray Karina can get real treatment soon.

angelduty said...

I shared this w/ everyone I know who is sick....these are my words " I have deal w/ ME, for over 30 yrs.....If I was removed from my home....I WOULD DIE..FOR SURE....
You won't get rid of 'Us' who are sick w/ this ! We will Spread this everywhere...."Till u let Karina GO HOME"