{"id":4616,"date":"2018-08-08T06:15:46","date_gmt":"2018-08-08T06:15:46","guid":{"rendered":"https:\/\/lfacinternational.org\/?p=4616"},"modified":"2022-05-28T08:18:18","modified_gmt":"2022-05-28T08:18:18","slug":"uzbekistan","status":"publish","type":"post","link":"https:\/\/lifeforachild.org\/2018\/08\/08\/uzbekistan\/","title":{"rendered":"Family voices in Uzbekistan"},"content":{"rendered":"

\u201cI don\u2019t like it, it\u2019s hard work\u201d said 12 year old Akbar.<\/span><\/strong><\/span><\/p>\n

Summed up in an honest and simple way, this is how he feels about having diabetes. Akbar was speaking to a room of 40 doctors and nurses at a training workshop in Uzbekistan. Designed to give young people and their family\u2019s space to explain their feelings and experiences around diabetes, it was valuable for the health professionals to hear from \u2018the other side\u2019. The voice of the patient and parent can, unintentionally, often be forgotten on busy clinic days.<\/span><\/p>\n

Life for a Child Education Director, Angie, asked Akbar\u2019s mother how she felt when her son was diagnosed two years ago. \u201cI was shocked – that part of my life is missing\u2019\u2019. She held her son\u2019s hand tightly and was close to tears, noticeably grief-stricken.<\/span><\/p>\n

Akbar didn\u2019t say much more. His mom said that his attitude had changed over the past year and he no longer wants to talk about his diabetes, he just wants it to go away.<\/span><\/strong><\/span><\/p>\n

She explained their management routine and how Akbar\u2019s father gets up at 3 o\u2019clock every night to check his blood glucose levels. Akbar\u2019s older brother and sister are protective of him and watch out for high and low blood glucose levels. There is a strong sense of solidarity amongst Akbar\u2019s family; they all eat the same foods and the kids enjoy walking together.<\/span><\/p>\n

\u201cHis friends were very pleased to see him when he returned to school as he had been absent for 2-3 months when first diagnosed,\u201d Akbar\u2019s mom said. Only some of his teachers know about his diabetes. Thankfully, those who do know are very helpful.<\/span><\/p>\n

When Angie asked Akbar\u2019s mom if she was beginning to feel more hopeful, or if things were still difficult, she said, \u201cIt will always be difficult\u201d.<\/span><\/p>\n

\"\"<\/p>\n

Saffiya is 15 years old and along with having type 1 diabetes, she has sensorineural deafness. She didn\u2019t want to be interviewed so her mother spoke for her. The diabetes diagnosis was \u2018a terrible shock to the entire family\u2019, she said<\/strong>.<\/span><\/p>\n

Diabetes has had a devastating impact on Saffiya\u2019s life; her school refused to allow her to return after diagnosis. Her only alternative was home-schooling. For Saffiya, this exclusion prevents her from joining in with important social activities, such as her much-loved dancing hobby.\u00a0 As there is no dance school in her village, and she has no friends of her own age she has stopped dancing. This is extremely difficult for Saffiya. It also makes it challenging for Saffiya\u2019a mother to \u2018let go\u2019.<\/span><\/p>\n

Sadly, it is common for children with diabetes to be refused entry into school.\u00a0 With the correct mediation and advice for schools from health professionals with expertise in type 1 diabetes, progress can be made, and this kind of discrimination can be minimized \u2013 education is the key.<\/span><\/p>\n

At the end of the session, Angie asked Saffiya\u2019s mother if she would like to send a message to the health professionals in the audience. Emotionally she exclaimed, \u201cTo you, we are one of many\u2026.to us, diabetes is our life, please be more caring towards your patients and their families. We also want a cure\u201d.<\/span><\/p>\n

A powerful and heartfelt statement.<\/span><\/span><\/p>\n

For just $30 you can provide a child like Saffya with insulin, supplies diabetes education and care for a month. Give a critical lifeline to a child today by making a donation today<\/a><\/strong><\/span><\/p>\n

\"\"<\/p>\n

Acknowledgements<\/strong><\/span><\/p>\n

The workshop was developed in conjunction with the International Society for Pediatric and Adolescent Diabetes.<\/span><\/p>\n

We would like to thank Professor Said Ismailov and his team, together with the visiting Paediatricians, Paediatric Endocrinologists and nurses from all over Uzbekistan or who welcomed us so warmly to their beautiful country.<\/span><\/p>\n

Thank you also to Dr Debra Cohen for participating in the training workshop and the children and parents who had the daunting task of sitting in front of an audience whom they hardly knew, speaking of very personal and painful topics.<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

\u201cI don\u2019t like it, it\u2019s hard work\u201d said 12 year old Akbar. 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