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Early Management of Renal Failure:
Prevention or Prevarication?
The Second National Symposium at the British Library June 18th 2004
Read the full symposium report here.
Deepak Mahtani, International Director of South Asian Development Partnership, spoke from his own experience on:
The benefits of early referral in treatment
OnIn the area of renal failure, organ donation and transplantation, we endeavour to work together in partnership with existing organisations to achieve the following objectives:
- To research, study and understand the social, cultural, moral and ethical issues associated with organ donations and transplants amongst South Asians.
- To raise overall awareness of the high incidence of renal failure and encourage prevention and early referral of South Asians.
- To identify and challenge key beliefs and mind sets which act as barriers to health awareness.
- To encourage and motivate South Asians to become organ donors for the benefit of the community.
Personal history
Many members of my mother’s family had hereditary kidney disease. My
grandmother died at age 38. My mother and her two brothers also died. In 1990,
my elder sister developed the disease. She had two children, and was facing
kidney disease symptoms such as itchiness and fatigue. Kidney disease was not
diagnosed, but instead she was given iron tablets, which made her very ill. She
finally got a second opinion, and the doctors came to the conclusion, too late,
that she had kidney disease. The combination of late referral, late diagnosis, and
poor treatment were too much and she died.
Whilst all of this was going on I considered donating one of my own kidneys to my sister, but I discovered I was at the infant stage of the same disease. However, in my case, early diagnosis was key and my illness was well managed for four years through diet and exercise. When I finally developed end stage renal failure and went on a waiting list for a kidney, a nephrologist at St Helier told me that I would have to wait longer for a kidney because I was South Asian. At first I thought this was discrimination, but then discovered that South Asians have three to four times the rate of kidney disease, in addition to having the B blood group. And hypertension and diabetes rates are higher than for other populations. In fact, 18% of the total number of kidney patients waiting for a transplant are of South Asian origin.
In 1995 I started dialysis, and ten days later received a kidney transplant. I stand before you today as testimony to the importance of early diagnosis and referral, regular check-ups, and awareness of symptoms.
Issues in the South Asian population
Amongst the Asian population, there is a social taboo of talking about illness,
almost as if it’s tempting fate. There is also community stigma toward anyone with
a chronic disease, and this can affect a person’s marriage and employment
prospects. This has repercussions for the entire extended family. Illness creates a
feeling of “loss of face” and humiliation.
To conclude, I believe it is important to create custom made materials that are culturally sensitive for educating the South Asian population in a way it understands. White ‘Anglo’ posters don’t speak to South Asians. It is important to emphasise that kidney disease is “Our Problem and Our Responsibility.” We as South Asians have to realise that we can’t rely on the host community to meet all of our needs. The South Asian Development Partnership believes that Awareness, Communication and Education (ACE) are the three key things that will help to win this difficult battle.
Read the full symposium report here.
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