[Korea University Medical Center Cancer Center and Intensive Care Center] 

 Korea University Guro Hospital Rare and Intractable Disease Center

Leading the way in solving the unknown 'triple burden' of rare and intractable diseases

Professor Song Hae-ryong, a pediatric orthopedic surgeon and director of the Rare and Intractable Disease Center at Korea University Guro Hospital, is checking the leg correction status of a child with dwarfism who is undergoing rehabilitation after femoral lengthening surgery and talking to them. Provided by Korea University Guro Hospital

The Ice Bucket Challenge campaign, which started in the United States in the summer of 2014 and spread around the world, greatly helped to empathize with the suffering of patients with the rare disease Lou Gehrig's disease, or 'amyotrophic lateral sclerosis' (ALS), and to practice sharing.

However, in fact, Lou Gehrig's disease is not the only rare and intractable disease. In addition to this disease, there are about 2,000 diseases classified as rare and intractable diseases, such as GABA receptor mutation syndrome, fetal alcohol syndrome, ankylosing spondylitis, and dwarfism. On the other hand, the total number of patients is only 500,000. This is because the number of patients nationwide for each disease is mostly less than several hundred, and at most 2,000 to 3,000.

Korea University Guro Hospital established the Rare and Intractable Disease Center (Director Song Hae-ryong, Professor of Pediatric Orthopedics) in 2008 and has been a leading medical institution in helping patients with about 60 musculoskeletal rare and intractable diseases.

Director Song's team is known for providing the highest level of medical services in Korea to patients based on their extensive clinical experience in the treatment of musculoskeletal rare and intractable diseases such as Lou Gehrig's disease, multiple epiphyseal dysplasia, ankylosing spondylitis, Sjogren's syndrome, and dwarfism.

Director Song's team is receiving great praise from patients for always involving not only the professor in charge but also dedicated nurses and social workers in all medical and educational processes from consultation to examination and surgery in order to solve the early rehabilitation and social welfare problems of patients with rare and intractable diseases.

The team of Director Song is characterized by operating the center in a way that professors from various medical departments needed for one patient gather in one place for collaborative treatment. In other words, pediatric orthopedic surgeon Song Hae-ryong specializes in the field of dwarfism and limb deformity correction, and Professor Seo Seung-woo specializes in spinal diseases such as muscular disease and scoliosis, ankylosing spondylitis, etc., but they are constantly collaborating with other department professors as needed.

This is why Director Song's team is now able to provide optimal personalized treatment services to patients with various musculoskeletal rare and intractable diseases through multidisciplinary collaboration with professors from various departments, including the Department of Pediatrics, Department of Rheumatology, Department of Hematology and Oncology, Department of Gastroenterology, Department of Thoracic Surgery, Department of Neurology, Department of Anesthesiology and Pain Medicine, Department of Plastic Surgery, Department of Rehabilitation Medicine, and Department of Family Medicine.

Meanwhile, physical pain is not the only problem for patients with rare and intractable diseases. Psychosocial, emotional, economic, and personal problems often make it difficult to treat, recover from, and prevent the disease.

Director Song's team is also helping patients focus on treatment by resolving or supporting the economic difficulties of patients and families with musculoskeletal rare and intractable diseases through a close cooperation system established with the medical social work team within the hospital.

One of them is a project that connects various social welfare organizations, companies, and individual sponsors, such as the Life Insurance Social Contribution Foundation, Interalia Public Interest Foundation, and Namchon Foundation, with economically disadvantaged patients and families with rare and intractable diseases on a 1:1 basis to support medical expenses.

Most patients with rare and intractable diseases in Korea are experiencing many difficulties due to a lack of information about the disease they are suffering from. Accordingly, Director Song's team is also working hard to provide useful medical information that helps with treatment and management by operating various education programs.

Director Song's team is also conducting free scoliosis and limb deformity screening projects for disabled facilities nationwide. This is to detect scoliosis in disabled people early and prevent complications through appropriate treatment. Of course, in the case of disabled people who need surgery, free surgery is also arranged in consultation with the medical social work team.

[Source]

[Kookmin Ilbo] Article on "[Korea University Medical Center Cancer Center and Intensive Care Center] (8) Korea University Guro Hospital Rare and Intractable Disease Center" published.

                2014.12.23

[KUKMINILBO] Korea Uni. Guro Hospital Raredisease Center. 2014.12.23

Link : http://news.kmib.co.kr/article/view.asp?arcid=0922888821&code=14130000&cp=nv