The ME Association Denmark has shared information about another case that has many similarities to Karina Hansen's case. We are saddened to see yet another young woman and her family facing such a difficult situation. Her family has chosen to remain anonymous. Please read below for details.
Post from ME Association, Denmark:
New Danish “Karina case” in North Jutland?
The ME Association, Denmark, is posting this for the parents of a severely-ill ME patient. Their daughter is 23 and has been hospitalized after the involvement of the Board of Health. The mother is threatened with charges of neglect and the daughter may be given a state-appointed legal guardian. Here is their story. For now they request... that their identities remain anonymous.
“There have recently been online rumors that a new “Karina case” was on the way in North Jutland. (Denmark)
Our adult daughter, 23, has asked us to use social media to tell about what is happening to her right now.
In order to protect our daughter, who is currently hospitalized, we have chosen to make the case public, but to keep our identity anonymous for now.
Our daughter suffers for the neurological disease, ME, (Myalgisk Encephalomyelitis) which has the World Health Code of G93.3. She received the diagnosis from Dr. Valerius, Hvidorve Hospital, and from Dr. Henrik Isager, who is the leading expert in ME in Denmark.
Since 2011, our daughter had been tube fed, with a nutritional mixture that her doctor ordered for her. But she was having problems tolerating this and was losing weight. Both our daughter and we in the family became increasingly concerned about her weight loss and she decided to allow herself to be admitted to hospital on July 18, 2014.
Her intolerance to the tube-feeding resulted in a lot of weight loss over time. Our daughter has always been aware of her situation and the risks and consequences of it. But because of previous traumatic hospital stays, and the fear that something similar would happen again, she did not want to go the hospital again. Instead, she had chosen to be treated at home in a quiet, safe environment that would not risk a further deterioration of her underlying disease, ME.
Our daughter recently accepted that the current hospitalization was to take place and that it would be at the same ward of the same hospital where she had been treated very badly before. But she was not happy about it.
The homecare workers and the country had for some time, behind our daughter’s back, had contact with the Board of Health about our daughter.
In June 2014, after a home visit, her doctor made a referral for hospitalization because of anorexia. This was also without our daughter’s knowledge.
An assessment from a different doctor in September 2013 stated that it would be atypical for an anorexic patient to be bedridden for several years and that our daughter would like to eat, but that the problem lay elsewhere.
The current status is that our daughter is now in the hospital to be "fattened up" and when she achieves a better nutritional state, she has been told that she will be treated by psychiatrists and with physical rehabilitation.
Despite repeated requests to receive copies of her full journals, she has only received an edited version from the first 2 days.
The Danish hospital system is not designed for patients with the special needs that ME patients have - they are very busy and often remind us how their normally do things.
The mother is hired as a nurse and caregiver for the daughter and was therefore hospitalized with her. But after a week at the hospital, the parents were verbally expelled from the hospital on the grounds that they obstructed the staff in carrying out their work.
The goal, from our side, has been to create a tolerable environment for our daughter with the calm needed for her to be able to tolerate the tube feeding, as that is the most important thing right now. And to prevent that this hospitalization become yet another traumatic experience for her.
Our daughter now has a guard with her 24 hours a day. She is not even allowed to go to the bathroom unguarded.
The guard will even wake her up and tell her, for example, that now she must wash herself. She is forced to use her very limited energy to answer questions from the staff - body language is rarely accepted.
After a few days of a ban on visiting, the parents are now allowed to visit her 30 min. a day, but a nurse must be present at all times.
Our daughter has also now been allowed to have her mobile phone.
The father has been verbally advised to try to bring the mother's employment (as their daughter’s caregiver) to an end and was told that the mother will be charged with mistreating their daughter.
The father was also verbally informed that his daughter will be legally incapacitated. The court of Aalborg just sent a letter informing the parents of an impending court date where it will be requested that a legal guardian be given to their daughter.
We are very concerned about our daughter and pray that she will soon be nutritionally better and that the stress of the hospitalization does not mean a permanent deterioration of her ME illness.
At present, she is extremely exhausted and has lost more weight since she has been at the hospital. It is has been necessary to decrease the amount of tube feeding due to adverse changes in the blood tests and the reactions of her body due to the stresses that she is exposed to.
Further developments for our daughter and for us are hard to predict. We have followed the case of Karina Hansen - and we can already see many similarities!