"Many people with Ehlers-Danlos syndrome pay large sums of money to get treatment abroad"
"the Doctor did not Nanda Holm's symptoms seriously. As a result, she became paralyzed from the chest down. "
"Now, help the 46-year-old patients with rare diseases to get the right care. "
"– Many are looking to the specialists abroad, though they had actually been able to get help in Sweden, " she says."
"Just as Cecilia Prucha in Danderyd suffer from a 46-year-old Nanda Holm in the Bristol of Ehlers-Danlos syndrome. In 2007, she lost the feeling in large parts of the body. Nanda went to the hospital. Thought the doctor that she found on – and Nanda was sent home. A few months later she was paralyzed from the chest down. "
"the 46-year-old had to fight in several to be taken seriously by the authorities. Then it became clear how much work and knowledge that are often required in order to get the right help. "
"– a Lot depends on the individual patient. You must know what your rights are and you must be able to speak for themselves, " she says."
"Work as a patient contact."
"Now, using the Nanda Holm their experiences to help others who are in similar situations. She is patient contact at the Swedish association of Rare disorders, and she is also the so-called spetspatient at the Karolinska institute. "
"– In the beginning I had a lot of contact directly with patients, but the talks I like the most with the doctor because it usually is most effective. "
"– Much of the work is about taking forward action plans for patients. Another big part is to give doctors support in the writing of the certificate to the Insurance agency. It is important that they are correctly formulated for the patient to get the right compensation. "
"”a systems failure”."
"It is not uncommon that people affected by Ehlers-Danlos syndrome seeking abroad for medical treatment. Often pay for the treatments themselves. According to Nanda Holm had many of them been able to get help in Sweden. "
"– It is possible to get good care here, or alternatively you can get the state to pay for the cost of treatment abroad. But then it is that the investigation has been made in the proper way in Sweden."
"A big problem is the lack of knowledge of the health care and Insurance, she says."
"– It is a systems failure that lead to patients having to wait unnecessarily long on the right treatment, and that the people who have the right to compensation is liable to be left without money. It might make affected even sicker."
" nKälla: the national Board of health."