Read our interview with Nadezhda Epishina, M.D. and physical therapist Charitable Fund „Fragile people“ (Russian OI-organization) from Moscow, Russia. The interview was first published in OIFE Magazine 2-2021.

Who are you and what is your relationship to OI?

My name is Nadezhda Epishina. I am a doctor and a physical therapist. I have been engaged in the project “Mobile rehabilitation service” of the Charitable foundation “Khrupkiye Lyudi” (Fragile people) since 2018. Before my work here I practiced rehabilitation with children who had different musculoskeletal conditions. Since 2018 I have been working only with children and adults who have OI. I like my work very much and feel a great admiration for OI patients. I am inspired by their high intelligence, sense of humor, firmness of purpose and persistence as well as incredible cheerfulness in spite of all difficulties that they need to overcome. We motivate each other and work in one team.

Please tell us about the rehabilitation project!

Goal

The goal of our project is to help people with OI to develop and keep the maximum possible level of physical activity and independence skills. We look for the most important activities to increase their level of quality of life in general. In our work we apply the functional rehabilitation that is built into patient’s day-to-day life and is functionally significant for the child. We work by the following directions: physical therapy, ergotherapy and psychology.

Our approaches are:

• Life. All our clients, a child and an adult, is a very important person to us. That is why we set the rehabilitation purposes individually in each case. We do our best to align the rehabilitation purposes with those tasks that the person must do at his/her everyday activities, help in socialization and realization of his/her abilities and personal goals.
• Partnership. We work in partnership with each client, his family and surroundings, project specialists and our colleagues. We set the goals, plan interventions and assess the results together. Every teammate takes an active part, and the shared responsibility helps to provide the all-round support.
• Evidence methods. We rely on the methods with proven effectiveness in our work.
• Integration and preplanning. We provide comprehensive care through physical therapy, ergotherapy, and psychological support. “Thoughtfulness of assistance” is important because it is considered within the framework of the international classification of function-ing. We try to consider and take into account all spheres of a person’s life, as well as the goals and possibilities of each client.
• Training. The families, OI patients and healthcare professionals are trained within the framework of the project. Our specialists are also continuously taught and upgrade the level of their competency.
• Rehabilitation built into life. We believe that a better rehabilitation is one that is built into everyday life when it is functional and meaningful to the individual.

First steps

In 2018 when I started working with OI patients, there was almost no information on how to work with OI-people in Russia. I was gathering information bit by bit from foreign sources, and the methodological guidance taken from OIFE’s website helped me a lot. We also have translated several books and methodological guides on OI. This allowed us/me to start working and gradually build up experience and results. During a period from 2018 to 2020 I worked in the project at the direction of rehabilitation of the foundation on the basis of H. Turner National Medical Research Center (NMRC) for Сhildren’s Orthopedics and Trauma Surgery in St. Petersburg as well as in a remote format. During this time approximately 200 juvenile patients with OI and other bone conditions and several adult OI-patients had received counseling and regular training. Properly selected individual recommendations help our patients to increase motor activity, overcome fear, become more confident and independent.

When the COVID pandemic started in 2020 our fund received the grant support for realization of the project in a remote (online) format. We started with three, but today, seven specialists are working on the project and two PTs are trained to work with OI adults. There are 74 children aged 0-18 in the project on a permanent basis now. OI adults are also periodically consulted.

Geographical outreach

We have an extensive geographical outreach. Project participants are from more than 20 regions of the Russian Federation, CIS (Post Soviet Republics) and other European countries. We consider the education of the OI patients and families a very important part of their rehabilitation. Therefore we constantly organize webinars, educational projects, publish useful materials and create a comprehensive knowledge base on issues of rare bone conditions. We also advise a medical staff.

What makes our project unique? Thanks to the opportunities of our online meetings, we meet and guide families regularly. Together with a family we think about how to organize everyday life and help OI patients to become more independent and strong. We help our clients at the very first stages after surgery or fracture. We can engage the family members and make rehabilitation a joyful process for all participants. Because the most important thing we can give our clients is to teach them to love the movement, not to fear it, to understand its importance and joy. We are seeking to find physical activity that a particular OI patient like and want to do regularly.

What were the biggest challenges?

We faced various difficulties. At the beginning of the work there was a serious lack of information on the rehabilitation of people with OI. The remote format of the work has caused new difficulties. For example, the technical problems such as accessibility to the Internet and skills to use IT technologies. There are also different level of awareness and knowledge about OI among parents of OI-children as well as differences in access to services. It was very difficult for me to create a team of specialists with the necessary knowledge and skills: to find such colleagues, to train them and to be their tutor. Of course, like all the foundations, we are constantly forced to think about financing of the project. All our clients are given free assistance.

What were the biggest successes?

The biggest successes are the successes of our mentees. That’s why there are so many requests to the project. For example, that a child with OI 3 type is already walking alone at 5 years of age, without support and has an active lifestyle. We build partnerships between families, children and professionals. Each of us is a full participant of the rehabilitation process.

What are the lessons learned from the project?

The main lesson learned is that through team working it is possible to achieve great results. Our rule is called 1+1=3. A positive experience and success of other people are motivators for the rest.

How was the collaboration with the Russian OI-organization?

Cooperation with the Russian OI-organization is one of the best happenings in my life. I work for a team of like-minded people who will always support and help. An active and positive life philosophy. Don’t give up and keep going, is something I have learned while working here.

Do you have any further plans/projects?

We will definitely continue to develop the project. We are going to start working on care for OI adults based on our work with younger people with OI. We want to create a methodological guide for health professionals with information on rehabilitation. We have established a line of psychological support for families. And the group format of work that is on-line training and on-line meetings is being actively developed.

Any messages to the OIFE Magazine?

The expression “fragile people, strong minds” I now know firsthand. This is true. How wonderful and important that OIFE supports people with OI from all over the world not only informatively but also psychologically, showing positive examples and drawing future prospects for life.