Pediatrician Dr. Natalija Angelkova from Acibadem Sistina Hospital participated in the preparation of the Spinal Muscular Atrophy Patient Care Guide which is part of the certified international professional guidelines for patients and their families. Dr. Angelkova has played the role of a reviewer and adapted the guide to our conditions and to our language in order for it to be clearer, applicable and useful for the people concerned.

“The guide was designed to be comprehensible to everyone, but also to raise awareness and spread information about the disease – how are patients followed step by step from diagnosis to the development of the complete clinical picture of the disease. The guide provides guidance on maintaining the general health of patients, as well as improving the quality of their lives and their daily activities through physical therapy with rehabilitation programs, orthopedic aids for the prevention of deformities, respiratory support, protection of the cardiovascular system, etc. All this is stated in separate chapters in the guide”, said Dr. Angelkova.

It is an internationally accepted guide, designed and recommended on the basis of a consensus on the management of SMA patients, adopted by international experts in the field of medicine, with guidance on how to treat these patients by different areas, as well as with explanations for disease detection, diagnosis, especially the genetic basis of the disease, and treatment options.

It is a genetically conditioned progressive degenerative disease that affects the spinal nerves. Patients have muscle weakness and movement difficulties, and some of them cannot walk or lose the ability to walk in time. Dr. Angelkova says that this guide serves both to patients and to their loved ones. It is also useful for medical staff (family doctors and pediatricians, nurses, physiotherapists) who take care of these patients, as a guide to procedures during care. It has been translated into Macedonian for the first time and will be posted on the official website of the International Group dealing with these diseases TREAT-NMD in Macedonian.

The sample is free of charge and is distributed to the members of the STOP SMA Patients Association. People who are interested in getting acquainted with the disease may also receive samples or they can read additional information on TREAT-NMD.org.