Critically ill 22-year-old female Cystic Fibrosis patient can be deleted from the organ donor list

Young cystic fibrosis patient rejects life-saving organ donation
A 22-year-old woman suffering from an incurable disease rejects an organ transplant that could prolong her life. The cystic fibrosis sufferer has been removed from the donor status list because she still has a lot to do. Doctors say she has about a year left to live.

Life expectancy is increasing thanks to advanced therapies
Cystic fibrosis (CF) is an inherited metabolic disease. In Germany alone, about 8,000 people suffer from the incurable disease, especially children and young adults. Characteristic of hereditary disease is a limited functioning of the mucus-forming glands in the body, which forms a very viscous mucus, which affects in particular the lung function, but also the digestive organs and thereby leads to symptoms such as shortness of breath, respiratory tract infections, diarrhea and fat. The course of the disease is very different and can affect various organs. The severity of the disease can vary enormously. As the treatment options are better, the sooner the disease is detected, my experts in this country, too, that a cystic fibrosis screening for babies is necessary. Life expectancy is steadily increasing thanks to advanced therapies and ever earlier diagnosis. Currently, the average life expectancy of cystic fibrosis patients is around 40 years. But not all will reach such an age.

Patient decides against transplantation and for life
Stanford's 22-year-old Stananananan near London will probably not be that old either. The young Briton is suffering from cystic fibrosis and doctors told her she has only one more year to live - or she is undergoing an organ transplant that slows down the disease. The young patient decided against a transplant, but still for life. "I know I take a big risk, but I'd rather enjoy the time I have left than wait for the call that may never come," Petrides told the British "Mirror." She has created a "bucket list" for her spare time, so a wish list with things that she still wants to do or achieve in her life. These include a Disneyland visit or her birthday party. Under many wishes she could already set a hook. For example, she saw a match of the London football team West Ham United and went viral. Their ultimate wish - running the red carpet at the Brit Awards - has not come true yet.

Patient could also die during transplantation
"No one could say for certain that the transplant is working and I could not do anything about my bucket list because the risk of infection is too great," she explained her decision against the surgery and her plans. She might die in the operation herself, but her new organs could fail after a few months. "If it had brought me another 20 years, I would have done it of course." About her illness she said: "Cystic fibrosis feels like you have a plastic bag over your head and could only breathe through a straw." Even if - how reported earlier - Patients today are on average 40 years old, the health status of Mrs. Petrides has worsened enormously since she was 19 years old. She had a normal childhood and youth before, loved sports, had been a captain of a football team and gone to festivals with friends.

Better education about the rare disease
In the beginning, her environment had interfered with her decision, some even refused to speak with her. Meanwhile, they support them. Even strangers donate money as part of a crowdfunding campaign so that they can make their last wishes possible. If there is any money left, it could go to a cystic fibrosis foundation, as she wished on her bucket list. In addition, she has a better enlightenment at heart: "People can not believe how sick I am because I do not look like that," says Petrides, "but the truth is that I sleep 20 hours a day and can not get up the stairs , My lungs rupture, so I cough up blood and since November I'm on morphine because my chest hurts chronically. We really need a better understanding of cystic fibrosis and how to treat it. "Last year, a lawsuit related to the disease caused quite a stir in Germany. A small boy who had cystic fibrosis for years had not received any medication and medical help, but was encouraged to meditate by his parents. The guardians were apparently followers of a crude religious group. In the process around the so-called "sect guru of Lonnerstadt" finally the verdict was made: Three years imprisonment for sect guru and likewise prison for the mother. (Ad)