‘Sicklers’ need a little more love
A section of the audience at the forum (Photos by Cullen Bess-Nelson)
A section of the audience at the forum (Photos by Cullen Bess-Nelson)

By Shauna Jemmott

PERSONS affected by sickle cell disease have complained that they have over the years been faced with additional agony, including discrimination from doctors and other medical personnel at the Georgetown Hospital.

Dr. Martin Campbell of the GPHC makes a presentation on Sickle Cell disease
Dr. Martin Campbell of the GPHC makes a presentation on Sickle Cell disease

They are calling on the relevant authorities to help put an end to that part of their never-ending plight.
FACES, an organisation with a mission to Fight Against Sickle Cell Stigma last Thursday hosted a seminar titled, “Meet Up” at the National Library, which aired testimonies of stigma and unjust treatment of victims at the hands of doctors. Georgetown Public Hospital Corporation (GPHC) Chief Executive Officer (CEO), Dr. Allan Johnson; Dr. Martin Campbell also of the GPHC; Dr. Neerah Jain, Opthalmologist at the Balwant Singh Hospital; and Director of FACES, Sabrina Kazim were the main speakers at the event.

MEETING UP

Dr. Allan Johnson, CEO of GPHC addressing the audience at the forum on Sickle Cell disease
Dr. Allan Johnson, CEO of GPHC addressing the audience at the forum on Sickle Cell disease

Kazim, who is also living with the condition, presented a wonderful talk show (assisted by a visual presentation) on the disease and what it did. She told of personal experiences of discrimination when she visited the hospital for treatment, which she cannot live without.
She said some victims of sickle cell had complained that they had been forced to endure their pains after visiting the hospital, as doctors told them they did not appear to be “in a crisis” and are asked to wait until they could prove that they were really having ‘crisis pain’ before receiving medication.
The lives of victims depend on medication, and whenever one is experiencing a crisis, that person is not sure if they will survive. She believes that it is only prayer that is keeping her alive, as whenever she experiences ‘crisis pain’, her first reaction is to pray, asking God to save her life.

NEED FOR SENSITISATION
Citing the need for sensitisation and education of hospital workers on sickle cell, she said many times it was obvious that medical workers did not understand the plight and needs of those living with the condition.
GPHC CEO Dr. Johnson applauded members of FACES for taking matters into their own hands to ensure that they live, but said that he, too, believes that many doctors were not knowledgeable enough about the disease, and do not understand the extent of the sickler’s pain.

He has made a commitment to have discussions with the hospital’s doctors and spearhead a symposium where Kazim can make presentations, educating them about the disease, and enlightening them about the victims’ experience and what their needs were.
“I’m not sure that it’s stigma; I just believe that people don’t understand the illness, and cannot treat the illness,” Dr Johnson said, adding:
“Doctors, when they go to medical school, one of the illnesses they are taught about is sickle cell. After that, people don’t take it seriously, because it’s not one of the common things that you treat when you get into a hospital; and so it goes to the back-burner.”

As a matter of fact, he is thinking of starting an educational programme to deal specifically with sickle cell disease, so that doctors countrywide will be made aware and thus administer better care to parents.
“We really need to alert people to this illness,” he said, “and to get maybe a cadre of doctors who will be taught across the country how to treat people who are affected and the treatment regime that they need and for us to also ensure that we have the treatment that they should have.”
After listening to Kazim’s touching presentation, Dr Johnson said:
“I really empathise with you; I realise what you’re going through, and I am going to do the best that I can.”

INHERITED DISORDER
Meanwhile, Dr. Martin Campbell explained that Sickle Cell disease is a group of inherited red blood cells disorder resulting from the formation of abnormal haemoglobin called haemoglobin SS.
He said under circumstances of low oxygen, persons with the disease experience the formation of stiff rods which contort the shape of a blood cell. A normal red blood cell would have the shape of a disc or doughnut, but when one has the abnormal haemoglobin S, this shape is changed to that of a ‘crest’ or a ‘half-moon’, which causes the red blood cells “to be fragile; to be rigid, and to adhere to each other and to the walls of the blood vessels.”
Signs of sickle cells, he said, can be explained through the destruction of the red blood cells and obstruction of blood vessels, abnormalities which can be recognised through a special blood test.
Sickle cell, he explained, is a disease that is transferred genetically. The programme was hosted by Ms. Shirley Thomas.

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