Projects - Kashin-Beck Disease Fund asbl-vzw

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Current project

Nutritional and Environmental Measures for Patients Suffering from Kashin-Beck Disease in Tibet Autonomous Region (P.R. China)

Since January 2009, KBDF, still in parallel with the research on the disease causes, has implemented and developed a programme supporting people in more than a hundred “natural” villages of the endemic area, dispatched over the Lhasa and Lhoca prefectures. The programme includes nutritional interventions in the population, with a specific focus on children under five suffering from Kashin-Beck disease, rickets and other disorders caused by nutrients deficiencies.
In order to have some concrete results in term of better growth of the children and changes of diet habits of the people in charge of children, the programme is planned for ten years.

The first phase includes 3 sections:
1. Children Nutrition Programme (CNP)
2. Food Diversification Programme (FDP)
3. Mycology Programme
Then, with the set-up of the preventive measures and field observations, KBDF expanded its project with:
4. Sanitation Programme
5. Training Programme

1. Children Nutrition Programme (CNP)

The main objective of the CNP is to prevent KBD in endemic areas, rickets and other bone diseases caused by nutrients deficiencies. A secondary objective is to build growth curves through the collection and analysis of data and compare to WHO/international standards.

Village clinics are built or rehabilitated by KBDF. Every month, the field staff organises a distribution of vitamin D and calcium carbonate for all children aged between 0 to 59 months old, to lactating mothers and pregnant women. The children growth is also monitored by taking anthropometric measures.

2. Food Diversification Programme (FDP)

The FDP is designed to provide long term and sustainable ways for the population in KBD endemic areas to ensure proper diversification of their daily diet. The main objective of this action is to reduce the incidence due to a monotonous diet, and thus contribute to a general nutritional improvement.

To reach this objective, different activities are implemented in the villages:
               -       Vegetables garden and seeds distribution
               -       Seedbanks at village level
               -       Tibetan Nettle Project (Protinet) with nettle as natural fertilizer
               -       Familial greenhouses
               -       Plantation of fruit trees
               -       Local production of rape oil

3. Mycology Programme

Fungal contamination makes barley inedible and is one of the possible etiological hypotheses for KBD. This programme has like main objective to reduce or to prevent the fungal contamination of the grains. The different measures have to be implemented, checked and supervised until it becomes new agricultural habits.

The programme includes:
- During spring time, disinfection of the seeds before planting.
- During the harvest, dispatching of threshing machines and fans to ensure a better harvest.
- During the storage, cleaning procedures for storerooms and good dryness of the grains by providing material such as metal shelves, air free bags, lime etc.;
- Annual control through laboratory analyses of the efficiency of these measures.

4. Waste Management programme

This programme is not directly linked with the prevention of the disease, but with public health. The cleaning up of the villages is an important issue on which KBDF is working on, because there is no “culture” of garbage management. Mountains of cans, plastic bags and a lot of other waste surround villages. KBDF cannot ignore this problematic.

Since 2012, KBDF has built three garbage collecting centres, fully operational today. Selective sorting is done and recyclable materials are sold, when it’s possible.

5. Training Programme

Thanks to its expertise and particularly in view of sustainability, KBDF chose to implement training sessions linked to each programme. The objective is to be sure that the population and the health staff understand well the different measures and the goal of the project. KBDF also want to give them the possibilities to manage it by themselves when KBDF mission will end.

Trainings are done at different level, for example:
- For the CNP, there are health promotion and nutrition activities for people taking care of children. More medical sessions are also organized for village leaders and doctors.
- For the FDP, there are trainings about greenhouses and seedbanks management, about seeds and fruit trees planting, etc. for villagers.
- In the mycology programme, foreign experts give lessons (laboratory, etc.) to the field staff.

Former projects

Curative health care & training

It started in October 1992, as a pilot project: 2 physio clinics were opened and doctors were trained on the spot. Following a positive evaluation in December 1993, the programme extended. In total, 65 physio clinics in 13 different counties of 6 prefectures were set up in 28 communities and 37 villages.

The main objectives of the programme were to decrease and treat the severe handicap of patients suffering of Kashin-Beck disease (KBD) and to introduce a new technique to the health workers and to train them.

Since November 93, several training courses had been organised in Lhasa for all the doctors. In total, 92 doctors of different levels were given the training. Most of them were village or community doctors, but also doctors of county and prefecture level were trained.                     

Every clinic received standard equipment, bought or locally made. In some villages, small clinics were build with the direct collaboration of the villagers.

Physical therapy study

It started in April 93 and was planned for 4 years. The data collection ended in March 97.

The study had 2 main objectives:

- to demonstrate the impact of the physical therapy treatment on the handicap of the people suffering from KBD
- to carry out a clinical and radiological description of this disease to complete the literature (never any study about KBD was carry out in Tibet).
Prevalence survey

The objective was to establish a map of KBD prevalence in the whole Tibet Autonomous Region. At present, all the endemic zones of KBD in T.A.R. are known and as well as the prevalence rate of almost each prefecture. These results were presented during the International Symposium on KBD and Related Disorders what took place in January 1999 in Beijing.

Epidemiological study

It was a study to confirm the 3 main risk factors described in the literature: selenium deficiency, the grains and their culture, the water. Six hundred children were enrolled in the study. They were from 5 to 15 years old, living in 12 rural villages of Lhasa prefecture.

* Selenium

Transversal study

The objectives were to characterize the KBD regarding its clinical, biochemical and radiological status and to identify KBD cases for a clinical trial of selenium supplementation.

Longitudinal study: Clinical trial of selenium supplementation

The objectives were to test the hypothesis of a relation between selenium deficiency and KBD. Following the results, to propose preventive measures.

* Grains and culture

The objectives were to test the hypothesis of a contamination of the grains during the harvest time and the storage period and to study the means of storage and the origin of the different grains. Following the results, to propose a preventive programme.

* Water

The objective was to verify the hypothesis that water is a risk factor for KBD because of organic materials (fulvic acid), some oligo-elements and minerals.

Prevention trial

Given the high public health impact of the disease in rural Tibet, and based on previous findings, it was hypothesised that a comprehensive prevention programme focused on a combination of defence and noxious factors will result in significant decrease of KBD in affected areas:

- reducing fungal contamination of grains: optimal drying of grains before storage, improve storage conditions, seeds and plants disinfection
- monitored iodine supplementation, in addition to the national iodine supplementation programme
- antioxidant therapy : Vitamin C, Vitamin E, selenium supplementation as a combination
- reducing organic content in drinking water : health education with regard to the use of drinking water from brooks or irrigation channels and to the use of appropriate water storage containers

The aim of this project was to assess the efficacy of different combinations of preventive measures on the evolution of KBD. It was implemented on the field the last 4 years (1998 – 2002).


* Clinical and radiological signs of KBD increase with the age. The most frequent clinical signs are joint deformities and pain. Later on, there is also a mobility restriction, which can be very severe. The most affected joints are the ankles, the elbows and the knees.

* Selenium deficiency is extremely severe for the children but does not allow explaining the difference between cases and non-cases. The results of the selenium supplementation do not show any effect on the main symptoms and signs of Kashin-Beck either on growth or thyroid function once iodine deficiency has been corrected.

* All the children are also severely iodine deficient. KBD is correlated with this deficiency.

* Concerning the grains, there is a very strong correlation between the presence of 3 fungi in the barley grains and the KBD.

There are 3 critical periods for the fungal contamination:

- during the growth period of the plants, fungal  contamination can occurred by infected seeds or by the field itself.
- during the harvest time, when the bundles remain on the fields
- after the harvest time, during the dryness of the grains, when they will be stored in bags.

Families with KBD have a higher % of dark barley grains in the samples collected in their houses, indicating a possible role of barley varieties; some varieties may be more sensitive to fungal contamination.

* Concerning the water, the KBD families use more frequently smaller water containers. The organic content (TOC) of the water in these containers was significantly higher than TOC in larger containers, suggesting that smaller containers do not allow sufficient time to deposit of organic matter.

* Children from families with higher income and higher access to different nutrients are relatively protected from the disease, probably reflecting the access to more diversified food and possibly other oxidants nutrients such as vitamin C or E.

In conclusion, the findings are compatible with the multifactorial environmental theory.

Part of these results, with more details, are published in different scientific reviews. If you want to read more: see § Publications.
Effects of combined micro-nutrient supplementation on Kashin-Beck disease in Tibet: a randomised clinical trial

The objectives of the current randomised clinical trial are to evaluate the effects of a combined micro-nutrient supplementation on the incidence and evolution of Kashin-Beck disease (KBD). The sample size was calculated at one thousand sixty four children, aged 3 to 10 years. For ethical reasons, all children are supplemented with iodine (when needed) and selenium. Subsequently, the sample was randomised in 2 groups (iodine/selenium + micro-nutrient supplement versus iodine/selenium + placebo) and supplemented daily during 3 years. The micro-nutrient supplement includes vitamin A, vitamin E, vitamin C, manganese, zinc and copper. Children will be monitored every 12 months (clinical evaluation) during the 3 years. Compliance is checked every 6 months on urine. Intermediate evaluations are performed every year to verify the difference in morbidity and mortality between the 2 groups. At the outcome of the study (November 2007), the occurrence and evolution of clinical parameters and biological markers of KBD will be compared in both groups.

Analysis and Implementation of Health, Nutritional and Environmental Measures for Patients Suffering from Kashin-Beck Disease. Lhasa, Lhoca and Shigatse Prefectures. (T.A.R.) P.R. China. 2004 – 2007.

Objectives of the projects

- To contribute to the improvement of the nutritional and sanitary status of the population living in endemic areas of KBD, and more specifically for the children
- To implement at large-scale different curative measures based mainly on grain decontamination

Proposed measures to attain the objectives

The work is divided in 2 parts, each one corresponding to 1 of the main objectives

Part A: It includes a brief biological study what aims to confirm previous clinical conclusions about the nutritional status of children living in endemic areas in rural Tibet (rickets, vitamin A deficiency, pellagra, manganese and other trace-elements and minerals deficiencies). A follow-up of the natural history of global malnutrition is also planed. In the same time, a large-scale nutritional intervention is implemented: vitamin A supplementation and correction of vitamin D deficiency.

Surveillance and supplementation for nutrition are integrated in Mother and Child Health (MCH) care activities. The MCH activities consist mainly to train the MCH (or community) doctors to the monthly surveillance of the pregnant women, lactating women, infants and young children; to train the MCH/community doctors to decision-making algorithms (diagnosis and treatment) for MCH; to organize training for trainers and supervision of doctors.

Part B: It consists of the implementation of different curative actions to prevent contamination of the grains during the whole agricultural cycle. The measures to be taken are seed disinfection, improvement of harvest and storage conditions and educational actions. The curative measures have to be controlled and evaluated permanently through mycological analyses. They are done in the KBD Lhasa laboratory by classical way.

There is also a research component what aims to continue the previous works. Fungal, soil and food analyses in other endemic areas of China where agricultural habits are different, are also planed.

Some specific techniques such as the compost of the fields are introduced to improve the quality of soils but it needs an expertise at prior.

A new lab technique which is less time-consuming and which does not require qualified people will be tested.

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