It is known that maintaining a high standard of treatment, tailored to each patient according to his condition, can delay the development of the disease. From the stage of diagnosis, regardless of the patient’s age, it is crucial to begin conservative treatments such as physiotherapy, hydrotherapy, as well as prescribe preservative drugs such as steroids, vitamins or other medications, to ensure proper nutrition and a longer life span. In later stages of the disease, it is very important to have a comprehensive periodical treatment in combination with treatments for maintaining swallowing, breathing and even preserving simple motor abilities such as moving a finger that maintains the patient’s independence. For this purpose, it is very important to keep multi-system clinics specializing in providing a comprehensive response to the various and complex aspects of the Duchenne disease, and in depending on the condition of each patient.
In view of the great importance of receiving individual treatment, rendering to the highest accepted global standard, A.D.I Association currently supports 2 multi- disciplinary local clinics that provide consultation for all DMD patients, at all stages of the disease.
The clinic provides a comprehensive response to young patients from diagnosis stage to the age of 16. The clinic includes a team of physicians and therapists in various disciplinary fields; neurology, lung, cardiology, orthopedics and hysiotherapy. The sharing of information between the various specialists enables the receipt of a comprehensive representation while reflecting the patient’s condition in the early stages of the disease, and enables the specialists provide individually tailored and accurate treatment to each patient amid his condition. It is known that high-standard maintenance treatments can delay the development of the disease and allow young boys more years to walk without needing a wheelchair. In addition, when all the specialists are gathered at the same location, it eases the life of DMD families who can be seen by all physicians without having to be dragged from one clinic to another. We collaborate closely with the clinic and support the completion of vital functions that are not funded by the hospital. This kind of cooperation improves the existing medical treatment and provides an additional and vital way to expand the clinic’s activity and to offering new treatments in the context of compassionate or clinical trials. To contact the clinic at Hadassah and to coordinate a visit kindly call :+ 972 (0)2- 5844751.
In cooperation with Dr. Amir Dori, a neurologist specializing in the treatment of peripheral nervous diseases with an emphasis on the Duchenne disease, we successfully managed to establish in 2016, a multidisciplinary clinic for patients older than 16 years. This clinic is the only one in Israel, today, that provides a comprehensive care. It operates with the cooperation of the neurological clinic as well as other clinics in the hospital, such as the heart failure, pulmonary disease, gastroenterology, orthopedics, rehabilitation, and additional clinics, all allowing the patients to optimally cope with the their highly complex adult patient conditions.
As the disease progresses, the muscle mass decreases and the inflammation of the fibrosis becomes more apparent, other complications arise, usually caused by inflammation. There are also severe side effects caused by the steroids: scoliosis, osteoporosis or other symptoms can occur. The clinic delivers an individualized response to the disease, by providing appropriate cardiologic drugs, osteoporosis treatments, and as much respiratory support as possible, non-invasive, direct feeding to the stomach, and more. All with the aim of preserving vital functions, improving the patient’s quality of life ,reducing pain and prolonging life. In addition to the clinic, an advanced research laboratory was established as well, enabling an advanced and relevant research in cooperation with the patients and under their consent. Since 2016, A.D.I. association , has provided significant support for the establishment of the clinic and its laboratory, the purchase of permanent and expendable equipment, and funding essential positions not financed by the hospital. The tied and effective cooperation with Dr. Dori, enables both the improvement of patients’ medical care and the advancement of research. To contact the Sheba Clinic and set up an appointment, please contact: neurology.mirp@sheba.health.gov.il
