People with Diabetes
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Bena in Uganda, aged 15

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Bena in Uganda, aged 15 With parents in Newcastle, aged 19 In Leicester, aged 25
Bena, 2004
 
 
Interview 9 Bena

Person with diabetes
Born in Uganda in 1954.
Diagnosed Type 1 in Uganda in 1965


Overview: Bena was born in the Kigezi District of Uganda, the daughter of a wealthy businessman. She was diagnosed when nearly 12 and then shunned by children who thought diabetes was contagious. She lived on chapattis and spinach and a bitter vegetable juice thought to cure diabetes. When Idi Amin expelled Ugandan Asians in 1972, her family came to England, and she was delighted to be allowed to eat a wider range of food. She eventually married an Englishman and had two daughters. She works as an office administrator, in a social services department that supports disabled children.

There are also interviews with Bena`s daughter, Emma and her husband, Terry.

Please note that Overview relates to date of recording 01 June 2004

 Short samples

1 An early sign that Bena had diabetes was the number of ants attracted to her urine around the hole in the ground that served her family as a toilet. But her doctor had never heard of a child getting diabetes and had to telephone Europe for advice [ 61 secs ]

2 When she was looking for work in Newcastle in 1977, she was careful to avoid mentioning her diabetes, because of the prejudice she encountered [ 52 secs ]

 
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01 Born Uganda, 1954. Dad born India, Mum Africa. Wealthy. High school. Diagnosed when nearly 12.
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02 Doctor hadn`t heard of childhood diabetes: phoned Europe to check. No ambulances. Rushed to hospital in doctor`s car. Unconscious.
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03 Hospital said must have bread, so Dad woke baker.
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04 GP Indian; English doctor phoned Europe. Hospital had little knowledge. Gave insulin 4 times daily.
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05 Mum taught injections & urine testing. Low carbohydrate. Karela water. Hypoglycaemic for hours: doctor & parents didn`t understand.
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06 Before diagnosis, noticed ants round toilet hole in ground. Little warning of hypos. Drank water from bitter plants.
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07 People sold parents false remedies. Parents sought cure. Might have died if poor.
Parents not ashamed, but Hinduism made me wonder what I`d done wrong. Grandfather may have died of diabetes.
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08 Mum did injections. Disliked them. Later I did them, or sometimes GP. Wasn`t taught how. Karela advertised in “Balance”. Hospital gave no information.
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09 Diet of chapattis & spinach. “Why me?”. Lost friends because they thought diabetes contagious. Hard to sit on school bench because of boils on bottom.
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10 Teachers ignorant re diabetes & beat me on bottom – stopped by Dad. Forced to do PE despite cramps.
Also got abcesses: maybe allergic to insulin.
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11 No check-ups. Eyes bloodshot. Parents paid GP. Only had one friend.
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12 Left school ‘69, but repeated some classes. Did business studies, typing, dressmaking. 1971-2, Dad paid for tuition.
Expelled to England, 1972. Insulin scarce. 250 miles to Kampala. Military search took insulin, syringes & needles. Paid for insulin in Kampala.
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13 Doctors scarce in Kampala. In England put in military camp, where had check-up. 15 days in Yeovil Hospital. Changed insulin. They hadn`t heard of vegetarianism, so I just ate vegetables. Was allowed potatoes for 1st time & other foods – a miracle.
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14 Diet sheet, measured food, set meal-times. Allowed chocolate, but didn`t want to damage organs. Steel syringes & needles, but smaller. Urine testing.
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15 Felt better thanks to change of insulin & diet. Moved to Newcastle `73 & admitted to hospital again. Had first checks of eyes & feet. Went to chemist…
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16 …& tried to pay for insulin. Chemist explained free. In Newcastle hospital for week. Injections reduced to 2. Afterwards took urine to hospital on bus.
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17 Lived in Gateshead council house with parents, 2 sisters & 1 brother. Kind neighbours told off people who made remarks. Climate cold. Little contact with other Ugandan Asians. At Gateshead Technical College, studied business, secretarial & English. Proud of what achieved despite diabetes.
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18 Went to rehabilitation unit, then Durham college, then Gateshead college in `74.
When job hunting, discrimination re diabetes.
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19 Sacked from 1st job in retail company in `77, when diabetes discovered. Sacked from another job, perhaps because of race. Best job in education department ‘78/`79. Then moved to Leicester.
Parents learnt English, but didn`t work: dad`s health bad because had lost everything.
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20 Moved to Leicester. Went to diabetic clinic. Cataract removed Newcastle, `79: travelled back for aftercare. Developed another cataract. Check-ups at Leicester eye & diabetic clinics. Warnings of hypos before & after move. Ambulance called once in Newcastle…
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21 …& was taught for 1st time that should eat after hypo, in `73.
Joined BDA in ‘70s & read “Balance”.
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22 After move to Leicester in`79, difficult for diabetic to marry in Indian community. Married Englishman.
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23 Some discrimination from families. Colleague at work told me not to bother. Things improved. Together 25 years.
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24 2 daughters. During 1st pregnancy (‘80/`81) had hypo at work for Health Authority. Diabetic clinic introduced blood test 4 times daily. Put strips in record book. Sickness & embarrassing hypos. Daughter premature, induced.
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25 In hospital last 3 months of pregnancy. Got depressed while daughter in intensive care. At home, fed myself before breast-feeding. Husband brilliant. Stayed with mother for month.
Had epidural & breastfed at first.
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26 Husband helped with blood test: BM sticks. Enjoyed time with baby, but hard to avoid hypo.
2nd daughter born `83. Pregnancy easier. Normal birth. Breastfed longer.
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27 After 1st child, back to work; after 2nd, at home. Children learnt to cope with my hypos.
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28 Daughters still monitor me. They read Balance & research online. One daughter gives Glucogen, other daughter calls husband. Last hypo a few months ago.
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29 Have them every 3-6 months; in summer 2003, every week. Once passed out on own, but managed to call ambulance.
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30 Paramedics climbed through window.
Returned to work part-time, `84. Once ambulance called to work. Work for Council.
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31 Sometimes failed to fetch daughters from school because of hypo. Still have hypos at work. Put instructions on notice-board. No warnings. Colleagues spot symptoms.
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32 When depressed re hypos, contact diabetic health visitor. Don`t bother medics: can manage. Hospital suggested changing injection site or reducing insulin. Family remind me.
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33 Cataracts in `79 & `83, carpal tunnel around `86 – parents helped, husband brilliant.
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34 Wish I could see same doctor at eye or diabetic clinic, but understand reasons why not.
Have seen diabetic health visitor since `79: used to do home visits, now at hospital. Taught to use blood test meter & pen. Used pen with Glargene, 2003. Now back on old insulin & disposable syringes.
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35 Typical day. Diabetic routine. Work for Coiuncil Disabled Children`s team & Benefit Support team. Disabled children make me feel lucky. Help old people…
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36 …get their benefits.
Career affected by diabetes & discrimination.
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37 Exercise provided by videos, grandson & chores. Diabetes plays big part in life – monitoring & planning.
Message – don`t let diabetes stop anything, but monitor carefully.
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38 I`ve achieved education, family, knowledge re diabetes, work for wonderful people.
In future, want to run for diabetes charity.
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Transcript
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Extras
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