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Sickle cell sufferers in Ireland get a new voice

NEW BRANCH: Dr Asaah Nkohkwo, Esther Onolomemen and Prof Simon Dyson

SICKLE CELL sufferers in Ireland got a new voice following the launch of a Sickle Cell Society (SCS) branch in Dublin.

The new venue will be headed by Esther Owuta Onolomemen of the College of Human Sciences, at University College Dublin, whose two daughters have the condition.

Esther’s election to head SCS Ireland came as a result of a long-term association she formed with SCS UK when seeking help for her children.

She told The Voice: “My two daughters needed extra support, so I began speaking to other parents. It was initially difficult to get the parents together, but over time, through my telling them of my experiences, we established a group.

“This encouraged a lot of parents to say, ‘okay, if she has gone through this and she can still live her life to this level, why am I behind closed doors?’”

Before moving to Ireland, Esther went on to form links with SCS UK and with the De Montfort University of Leicester, a unit for the Study of thalassaemia and sickle cell, where she worked closely with its head, Professor Simon Dyson.

Asked what she thought the first three priorities for SCS Ireland should be, she replied “Firstly Identifying roles and building strengths, then having a pilot structure, and from there I think we can get the organic structure which we need to prepare (for) all the objectives we have”.

Among those attending the launch were Professor Dyson, and the technical advisor to SCS UK Dr Asaah Nkohkwo, formerly of The Royal Marsden Hospital London, and a member of the World Health Organisation (WHO) sickle cell experts’ panel.

Delegates at the launch were addressed by the Nigerian Ambassador to Ireland, his Excellency Felix Y. Pwol.

He remarked that one of the major issues to be addressed was an “incomplete understanding” of the issues presented by the condition.

He went on to explain that this often meant families with members suffering from sickle cell being shunned by their cultures, especially if they return to their home countries, because of a belief that SCD comes as a punishment for wrongdoing.

“Nothing could be further from the truth than that, and I believe we will make progress“ he said.

He went on, “ Look at it this way, in the past in Nigeria nobody wanted to talk about Human Immunodeficiency Virus (HIV) but today you will see people who are living with HIV on television and in public conferences. That has come a long way”.

He added: “I believe that if we acknowledge this challenge we will go a very long way. I want to assure you that for our part we are ready to partner with you, and I believe there are various levels at which we can address this.

“Happily Nigeria has been a democratic government since 1999 so we have far more channels through which we can work.”

He concluded: “One of the things we need to do is to publicise, to educate our people to realise that there is no blame attached to people with sickle cell”

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