Treating rare diseases has always been a challenge for the medical world. Today, despite advances in technology and medicine, there is still a lack of places where patients with rare diseases receive comprehensive care. In order to achieve the best results of treatment, an interdisciplinary approach to the patient and the treatment process is necessary. Effectiveness comes from knowledge and sharing of experience, including research results, to develop and validate the therapies used.
What is the challenge in treating rare diseases?
In our center we specialize in the treatment of congenital and acquired defects of the locomotor system. Very often these are not the only diseases that our patients struggle with, most of them have many other coexisting diseases.
Treatment of such patients must therefore be co-ordinated and directed towards all of their disorders. To make matters worse, children do not always get the best help when they learn about their condition from the internet. In my opinion, the challenge today is to provide our patients with coordinated, comprehensive care using evidence-based and evidence-based treatments.
It seems that in the era of fake news, this remains a huge challenge.
In the fight against fake news, it is important to build public awareness. Does your center also deal with the education of families and caregivers of patients?
We care about educating parents and patients. We build awareness of what to expect from doctors, what is the visit, what questions to ask during it, what are the treatment options. This is all in order for the parent to become a specialist in the particular disease unit with which he met. It is very important that we, the doctors, put emphasis on the education of parents, medical caregivers.
We try to put the patient at the center
We must remember that we are only one part of patient care, and others, such as physiotherapy, parental care at home, the help of a psychologist or other therapists, are just as important. Such education takes place at least during the consultation, which in our center often lasts up to 4 hours or more. We give the patient and their loved ones as much time as they need. In addition, a reliable diagnosis and an interview are necessary, which cannot be carried out
in a few minutes.
And it is at this time that patients and caregivers receive expert information, supported by scientific evidence and our experience. We try to put the patient at the center of the universe (our interest) as the sun, and we as” Heavenly Bodies ” in the form of doctors, therapists or caregivers, we circle around him and help him solve problems.
What does the treatment at the institute look like, then?
The basic tool of our work is the “surgical life plan”, created in the form of a report, in which we present an individual approach to solving a particular problem in a particular patient. Thanks to this, during the first visit, the person learns what the treatment will look like in a year, 5, and even 15 years. The presentation of such a plan builds a certain basis for understanding the health problem by the patient himself, his parents and caregivers.