1. Posted on Friday 14 August 2009 - 09:36

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   Owings

   

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   Epilepsy urged to declare their status openly
   By Owings Chawanda
   
   The Sue Ryder Care and Sue Ryder Foundation in conjunction with the Federation of Disability Organizations in Malawi (FEDOMA) have urged persons with epilepsy to come out in the open to declare their status so that they benefit easily from the various projects aimed at improving their lives in the country.
   
   Briefing journalists on Thursday in Blantyre Program Manager for FEDOMA, Action Amos said, most persons with epilepsy lack support because they hide themselves from the public a thing which he said makes them lead a very difficult life as they do not get assisted.
   
   However, Amos observed that in most cases epilepsy hide their status because of the stigma and discrimination they get from the public.
   “It has come to our attention that there are a lot of epilepsy out there, but they shy to expose themselves because they are isolated. But we are now appealing to them to exercise their rights to openly declare their status and I am urging the community to start accommodating them instead of stigmatizing them because they are human beings as well just like any other person ,” said the program manager who is also living with epilepsy.
   
   He noted also that most epilepsy think they are incapacitated that there is nothing they can offer to the country.
   Amos who is currently studying a Masters Degree program therefore advised fellow persons with epilepsy to stop underrating themselves as they have a lot to effectively contribute to the development of the country just like any other person.
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   It is for this reason that the two organizations have embarked on a three year Epilepsy Project worthy K1Million last week with the aim of drawing attention to the rights of epilepsy and improving their lives.The project is the first of its kind to be implemented in country.
   Among other things, Regional Director for Africa Sue Ryder Care Levi Mihowa said the project will bring epilepsy out of the shadows so that the actual population of epilepsy is recorded.
   Mihowa also said the project will help to lobby and campaign for national epilepsy policy which will be safeguarding the rights of epilepsy.
   He added that it will further assist in developing a membership amongst epilepsy including less visible groups of persons with disabilities in rural communities.
   
   At least 130,000 persons in the country are estimated to have been affected with epilepsy directly or indirectly.
   Meanwhile the project is being implemented in seven districts namely Balaka, Ntcheu, Zomba, Blantyre, Lilongwe, Mzuzu and Machinga and it has been funded by DFID.

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Reactions

1. Posted on Wednesday 02 September 2009 11:33

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   Owings

   

   Owings Chawanda
   21 berichten
   Lid sinds June 2009

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   The debate on whether epilepsy is curable or not is very interesting and informative.
   
   I am an advocate for the rights of persons with epilepsy and I sought the views of three neurologists on this matter and their views are as follows:
   
   “Some forms of epilepsy can be cured by epilepsy surgery, but even with good access to top epilepsy care centers in the US only a small minority of people with epilepsy would benefit from such surgery. I agree with you, I think the MoH would benefit from a bit of education on the topic.
   
   gb
   
   Gretchen Birbeck
   #324 West Fee Hall
   East Lansing, MI 48824
   USA
   Tele: +1-517-884-0277
   Fax: +1-517-884-0275
   SkypeID: muyucottage”
   
   “Dear Levi!
   
   Long time, no see, not heard! How are you? What is happening on epilepsy day? Anything else happening that I should know?
   
   Epilepsy is always a symptom of an abnormality in the brain. If you can treat the cause you can also cure epilepsy (surgery, medication eg tumour, cysticercosis) Most of the time epilepsy caused by unknown origin and then you just manage epilepsy, treat with lifestyle advice and antiepilepsy.
   
   So I would not say it is curable or uncurable, it is much more complicated than that. But you can say that it is manageable, most patients respond well on medication.
   
   Good luck with your briefing!
   
   Yours
   
   Dr. Tepu”
   
   “Dear Levi,
   You are correct in stating that in most cases epilepsy is not curable. In about 70% of cases of epilepsy, treatment with anti-epileptic drugs will suppress seizures, but the epilepsy still lurks beneath the surface. However, in about 2 thirds of people with epilepsy who have been in remission for at least 2-3 years on treatment, the epilepsy will have resolved and the treatment can be withdrawn without recurrence.
   With best wishes,
   Peter.
   
   Peter Newman
   Consultant Neurologist &
   Honorary Senior Lecturer
   Director of Postgraduate Medical Education
   James Cook University Hospital
   Middlesbrough
   
   Tel: 01642 854395 Fax: 01642 282770
   Peter.Newman@stees.nhs.uk”
   
   Levi Mihowa, Sue Ryder International, Balaka, Malawi

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