亜急性硬化性全脳炎(SSPE)家族の会
 

What is Aozora no kai

SSPE Aozora no kai is an association for the families of SSPE (subacute sclerosing panencephalitis)patients. As of February 2018, our organization is composed of 42 patients and 51 supporters. (There are reportedly 81 SSPE patients in Japan.)

 
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Activities of Aozora no kai
We issue a triannual newsletter to provide the latest information on SSPE. And we communicate with each other via our Facebook page to find better treatments and means of providing comfort for SSPE patients. Each year, we have a three day summer camp to meet with one another and have discussions with medical volunteers. Furthermore, we make appeals to the Japanese local and national governments to improve policies on rare and intractable disease support.

Treatment and Life for SSPE patients in Japan
Unfortunately, there is no sufficient cure for SSPE available. Usually, patients get treated with health insurance-covered drugs such as oral isoprinosine and intraventricular interferon (which is inserted through an Ommaya Reservoir). There are some cases in which patients at an early stage have tried intraventricular ribavirin as an investigational new drug, though the medication was unsuccessful in most cases and is not covered by health insurance.
Over the course of a couple years, patients progress to stage 4 SSPE and become bedridden. It becomes necessary for a gastric feeding tubeto be inserted (to maintain nutritional balance) and to do tracheostomies (to clean and remove secretions from the airway). After the acute stage, patients transition from the hospital to home care or a rehabilitation institute.

Healthcare and Lifestyle Support for SSPE Patients in Japan
SSPE is certified by the Japanese ministry of health, labour, and welfare as a severe intractable pediatric disease, which entitles patients to subsidies for the majority of their medical expenses. Also, SSPE patients living with family caregivers have access to public support services such as visiting nursing and visiting bathing (where health care professionals come to the patient’s home to aid in daily living). In addition, sufferers of SSPE are certified as severely physically disabled, allowing them to receive subsidies for living support goods, such as wheelchairs and mobility cars.

Our Strategy with Aozora no kai
SSPE is a complication that can occur as a result of measles. To eliminate SSPE, we assert the necessity of widespread measles vaccination through participation in discussions regarding vaccination held by related organizations like the Japanese immunization committee and academic pediatric psychiatry and neurology societies. Although Japan went through a measles pandemic 10 years ago in which 10,000 cases were reported, the WHO in 2015 declared that measles viruses originating in Japan had been eliminated. Small epidemics, however, still sometimes occur as a result of measles originating from overseas. (189 people infected in 2017)

Our Wishes
As globalization progresses, it remains difficult to completely put an end to epidemics caused by measles from overseas. To accomplish this, the measles virus must be exterminated worldwide, similarly to smallpox. Toward this end, we wish for measles vaccination to be done thoroughly in all countries (at the lowest including antibody acquisition at least twice), and for measles to go from from eliminated to totally extinct. Even once measles is eliminated in a country, we can’t overlook how decreases in vaccination rate may help the spread of epidemics, so we would like to continue our activities to maintain and improve the vaccination rate against measles all over the world.

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