New OIFE Member OI Kazakhstan
In September 2022 we met two OI-professionals from Kazahkstan at the Sheffield OI conference. This was dr. Assem Dossanova and her husband professor Dossanov (photo on the right), who is one of the central orthopaedic surgeons in the Asian country, with a small percentage of the country situated in Europe. The couple told us that there was a relatively large OI-group in Kazakhstan, but that they struggled with lack of experience and were interested to join the OIFE to learn from other organizations and connect with the international OI-community. In October 2022 the group became an associate member of OIFE. With the assistance from dr. Dossanova, who is also the OIFE delegate, we have made an interview with Birzhan Sarzhanov, who is a volunteer in the organization.
Who are you and what is your relationship to OI?
My name is Birzhan Sarzhanov – a member of the Public Association “Patients with rare bone diseases”, father of children suffering from OI. Currently we have registered more than 100 children between 3 months and 16 years with this diagnosis in Kazakhstan.
Situation of people with OI in Kazakhstan
Nowadays the situation for patients with osteogenesis imperfecta in the Republic of Kazakhstan is improving. The first clinical guideline for diagnosis and treatment of Osteogenesis imperfecta was legalized in 2016. There are two centers of specialized care FC UMC “National Center of Motherhood and Childhood” and the Center for Diagnosis and Treatment of Rare Bone Diseases of Alanda clinic in our capital.
FC UMC provides genetic diagnostics, bisphosphonate therapy, surgical correction, rehabilitation, and psychological support.
A team of doctors conducting bisphosphonate therapy, surgical treatment, and rehabilitation works in the Center of Rare Bone Diseases under the leadership of Ass. Professor Dossanov B.A. Moreover, modern methods of surgical treatment are being developed and implemented here, and a clinical study of domestic telescopic implants has been started in collaboration with international experts. The Center regularly hosts master classes and seminars for doctors, including from the regions.
About the organization “Patients with Rare Bone Diseases”
The patient organization “Patients with Rare Bone Diseases” is a relatively young organization. We registered with the justice authorities of the Republic of Kazakhstan in December 2021. 10 parents of patients with OI represent the main core of the organization.
Narbutina Almagul, a mother of two children with OI, is currently the President. Vice-President Bigalieva Ainamkoz, is also a mother of two children with OI. These two women carry out the main management of the organization «Patients with Rare Bone Diseases”.
Mission and challenges
The mission of the non profit has been to improve the quality of life of patients with rare bone conditions. According to the fact that the main members of the organization are patients and parents of patients with OI, we decided to solve the challenges of diagnosis and treatment of this condition first. For this reason, we organized round tables with heads of healthcare organizations and parents; we initiated programs on television and we discussed financing problems even on social networks.
Today we can say that the key challenge has been solved. As many as two Centers provide medical care to children with OI. We have quotas from the State, and we can choose the best service in a private clinic. We work with charities to purchase medical devices privately. We also support clinical research organized by the scientific center of the Medical University.
However, the quality of a person’s life cannot be assessed only by physical well-being, so we have big plans ahead to activate the social life of “brittle” children. The issue of accessibility of school education for wheelchair–bound children is still not solved. Not all municipal schools have ramps and elevators. Therefore, our children have to study remotely. This is the next issue on our agenda.
We would like to see our children active and happy. Using the example of other non profits, we are going to organize social projects like holidays/camps, so we can show children that a diagnosis is not a verdict. You can achieve a lot even if you have OI!
Among the active members of the patient organization, we have about 10 parents of patients with OI, as well as 5 adult patients. In fact, we are not actively recruiting new members yet. Since the foundation of the non profit, we have been more occupied with organizational issues.
Parents whose children have been diagnosed with OI, learn about us from doctors and medical staff, less from social networks. We have active messenger chats where we share relevant information and social networks in FB and Instagram.
Our biggest challenge and problem is our passiveness. If we want to change the attitudes of others to ourselves, we must first change ourselves. For a long time, people with disabilities have been positioned as recipients of care. In fact, each of us has unlimited opportunities and talents, the main aim is to show them. The biggest challenge is to step up our actions and implement our many plans.
We are a young organization that has not yet been able to express ourselves completely. Nevertheless, already today, we have the opportunity to choose a doctor and a medical center – and this is one of the main achievements of our team.
On February 28, we are planning a TV story dedicated to Rare bone conditions, including OI. On May 6, on the International Day of “OI”, we will do an activity to raise awareness about this serious and rare disease. In the near future, we will begin preparations for the organization of the event “Children’s Day”, which we celebrate annually on June 1.