Some sickle cell patients in the Lower Manya and Yilo Krobo municipalities in the Eastern region have benefited from a charitable Christmas outreach programme organized by the Elorm Phanarosis Foundation.
The Elorm Phanarosis Foundation on Saturday donated assorted freebies including packs of fruit juice, mineral water, biscuits and folic acid to the patients to express the Foundation’s commitment to sufferers of the sickle cell disease as a show of love especially during the festive season.
The programme which took the team to the homes of various patients living with the condition saw the presentation of assorted items to affected patients as part of the objectives of the Foundation to a firsthand interaction with sufferers.
The team’s first stop was with 12-year-old Kwaku. Affected by the sickle cell disease, young Kwaku lives with an uncle and his wife together with his big sister at Ayimesu located on the Odumase – Asesewa road in the Eastern region.
Frail but full of life, the class five pupil has lived with the condition since birth. Having lost his mother at a tender, Kwaku had no choice but to relocate to Ayimesu.
His uncle, 48-year-old John Angmorteh said the family has lived with Kwaku for the past eight years following the death of his mother.
Young Kwaku is unlike any other kid of his age. He spots a bulky, yellowish pair of sullen eyes and an engorged head; typical symptoms of a sickle head affected person.
Typical of most sufferers, Kwaku appears to be suffering from one more symptoms of the sickle cell condition, delayed growth.
Today, Elorm Phanarosis Foundation puts a smile on his face with the Christmas freebies.
Mr. John Angmorteh admits that taking care of a sickle cell child is a difficult task. He wants help from generous organizations to emulate Elorm Phanarosis’ gesture and thus appealed for more of such support.
“The family would be grateful if more of such support is extended to us to ensure the proper upkeep of the child. Assistance in cash and kind such as a gas cooker, upkeep money, medical care and educational support would go a long way in helping him and us,” Mr. Angmorteh pleaded.
Another carrier of the sickle disease the team visited was 23-year-old George Sogah Akwetey.
A student of the University of Cape Coast, George’s family first detected symptoms of the condition in him about ten years ago. Severe pains at the joint, one of the most common symptoms of the sickle cell disease were some of the first symptoms he noticed before the diagnosis.
“In the beginning, I felt very weak and also felt pains at my joints,” he complained.
Rather unfortunately, George laments that the situation interferes with his education as he’s sometimes unable to write his examinations when the complications set in.
“Sometimes, I am unable to write my school examinations whenever I have an attack. Also, the pains are very severe during the cold weathers,” he disclosed.
He therefore appealed for assistance from various bodies including ‘government organizations’ to manage his condition.
His father, Mr. Sogah Francis Kwame explained that the family took George to the hospital as a first step upon detection of the ailment.
“We first detected his condition about ten years ago. The first step we took thereafter to send him to the hospital after which he was put on medication,” he said.
Just like Kwaku, George’s family is equally at their wits end in spending on his medical bills. His father explained that this is taking a toll on the family and appealed to benevolent bodies and groups to extend a hand of support.
“The family is financially burdened in meeting the medical requirements of our son. Admission and cost of treatment is expensive and the family needs some assistance in this direction,” he pleaded.
To him, families with sickle cell children must ensure that they are well catered for since the sickness is a delicate one.
“I’ll advise other parents to take good care of their children who are suffering from sickle cells because the sickness is very dangerous and they must pay close attention to them,” Mr. Sogah explained.
Other beneficiaries of Elorm Phanarosis’ philanthropy included 13-year-old Millicent Nuettey and 19-year-old Agede Alphonse Nukunu, both students.
Quite evidently, both had no idea what they were suffering from. While Millicent described her situation as “rheumatism,” Alphonse who said he started experiencing the pains when he was 18 years old, only described his condition as “Occasional pains in the hands, legs and waist.”
Alphonse’s father, Mr. Robert Agede, an assembly man for the Odave Electoral area in Somanya said treatment for the sickness was expensive but nevertheless counseled parents and guardians of children with sickle cell to ‘manage the situation.’
“I want to help Elorm Phanarosis Foundation to advocate for sufferers of sickle cell to accept that while the disease is not curable, they can all the same manage it and if you happen to manage it, the affected person can still live their normal lives,” he asserted.
He also appealed to individuals to contribute to the cause of Elorm Phanarosis Foundation through cash and kind to meet its goals and objectives.
Mr. Addo Dufuor, a Community Health Nurse who joined the team in the presentation, advised potential couples to check their status before marrying.
According to him, prospective marriage mates should prioritize the checking of their sickle cell status rather than hastily jumping into wedlock.
“Don’t marry just because you are in love, do all the necessary checks before you get married or commit yourself to have children,” he advised.
He also bemoaned the lack of consciousness of the sickle cell disease and called on media houses to join the campaign of awareness creation by using their various mediums to advocate for the necessary attention for the disease.
Mr. Duffuor also called on families with families with sickle cell victims not to neglect such children but accord them the necessary care, attention and medical needs.
Founder and Chief-Executive-Officer of Elorm Phanarosis Foundation, Mr. Bright Elorm Kugblenu told Rite news that the main aim of the foundation was to raise and create awareness around the sickle cell disease.
“This foundation was formed because of the lack of awareness for the sickle cell disease. I felt that much is not being done concerning this issue. I have seen a lot of people going through this and it is terrible,” he said.
To him, creating awareness around the condition should be a regular activity which should not be limited only to the ‘World Sickle Cell Day.’
“I thought it wise that there should be more than just waiting for the World Sickle Cells Day that is the 19th of June. I felt it should be a daily affair that we should do. If we really want to get rid of this situation, then we ought to get the campaign going on a daily basis,” he stressed.
The World Sickle Cell Day is set aside to help increase public awareness on the disease and the struggles carriers and their families go through.
Mr. Kugblenu also revealed plans of the foundation to establish single, unemployed parents into profitable businesses to enable them earn a source of income to cater for the affected children, especially for a disease where sufferers are dependent on others for their upkeep and survival.
The CEO further revealed that the introduction of a special ‘application’ to aid people easily check their sickle cell status was underway. He explained that the introduction of the app would ease the stress of people in visiting hospitals for the regular check-ups which most people are uncomfortable with.
He attributed the increasing cases of sickle cell cases in the country to people’s ignorance of their status and maintained the hope that the introduction of the app would therefore enhance the ease of checking the sickle cell status of an individual, a development that will greatly help in the sickle cell advocacy.
Mr. Kugblenu added that he was touched by the plight of the sickle cell patients in the country and promised improved assistance from him in the coming years.
Sickle cell is a genetic condition which affects the red blood cells and cause it to break down with other accompanying diseases, which include the damage of lungs, heart, kidneys, liver, and eyes amongst others.
Available data indicate that 18,000 children are born in Ghana annually with the condition, of which 50 per cent die before five years.
The beneficiaries were also unanimous in expressing their appreciation to Elorm Phanarosis Foundation for their love for the affected children in the communities.
The Ministry of Health and other stakeholders such as the Sickle Cell Foundation of Ghana must regularly visit schools, churches, mosques, work places, football clubs and other associations to create awareness and educate people about the disease.
We need all hands on deck as Ghanaians to fight against the sickle cell disease.