Have always been sick – healthcare can’t find the fault • Half a million live with rare health conditions
About 500,000 people live with diseases that are difficult to detect, so-called rare health conditions – but many do not receive the care they need.
Fredrika Menninga, 20 years old, has always been sick but the health care has not found what is wrong.
Right now, the National Board of Health and Welfare is developing a national strategy for how the healthcare system should help these people.
Fredrika Menninga, 20 years old, has a catheter inserted in her arm to receive nutrition. When she eats, she throws up most of it again. She has always been ill with severe stomach pains, vomiting, migraines, sudden fainting spells and paralysis of one side.
– It has only gotten worse and it’s as if a big train has arrived and it doesn’t seem to stop. It just gets worse and worse every year. I’ve missed a lot of school time and I can’t work. I never know when I will feel bad and when I will feel good, says Fredrika.
She has sought treatment countless times, been admitted and investigated. But the healthcare system cannot determine what is causing her to be so ill. Many times she has not been believed.
– Then it doesn’t help that I’m a young girl. “Because all girls have a little stomach ache and it’s just anxiety,” says Fredrika.
National care strategy underway
Fredrika belongs to those with rare health conditions. About 500,000 people are estimated to live with it.
Sweden is one of two countries in the EU that lacks a strategy for how care for these people should work. Now the National Board of Health and Welfare is developing a national strategy for rare health conditions.
– We see that there are shortcomings. Coordination is needed. It is a complex group, often with multi-organ involvement, so coordination is needed. You need to get to a diagnosis faster and there needs to be a treatment chain afterwards as well, and it needs to be better, says Lena Lövqvist, investigator in the knowledge management department for the National Board of Health and Welfare.
Fredrika is looking for help abroad
Fredrika and her family have themselves sought information and help abroad. A doctor in Germany found that she has vascular compressions and weak connective tissue and was diagnosed with vascular compression syndrome. But healthcare in Sweden does not want to fully recognize it.
So now she has to pay for her surgery herself, which is done abroad.
– Not everyone gets better and that’s the case with all surgeries, but if you get a little better, it’s still good, I think, says Fredrika.