“Sickle Cell Disease (SCD) is a chronic blood disorder where the red blood cells are mutated and as a result of that, you have so many issues and symptoms… basically sickle cell disease affects your organs and eventually you just have all your organs shut down,” according to sickle cell warrior, Sabrina Kazim.
The Fight Against Sickle Cell Stigma (FACES), a non-profit organisation, was founded by Kazim – a sickle cell warrior in June of 2015 to address the stigma and discrimination associated with the disease.
“FACES has been formed because persons with sickle cell disease realised that it’s not just a fight of your life against the disease but it’s a fight of your life for your life,” she said.
Founder of FACES, Sabrina Kazim along with PRO Michell “Big Red” King
Kazim said since its formation, the organisation has been able to host a number of workshops with various Ministries and agencies. She added that they are also in the process of ascertaining the guidelines and protocols for sickle cell treatment at the medical institutions since quite often sicklers are not taken seriously.
“Because of the involvement of opioids in the treatment for sickle cell persons in the medical field believe that persons with sickle cells are most of the times malingerers and that they are not really in pain, their pains are not authentic,” she said.
Kazim further explained that because of that discrimination, persons experiencing ‘excruciating’ pain are turned away from the emergency rooms at both private and public hospitals.
Because of the nature of the disease, a sickler would sometimes require treatment more than once per week and according to Kazim, medical workers would question whether the person is faking their pain. “Pain is not measurable from just looking at a person, you cannot accurately say if a person is in pain by just looking at them. That is a form of abuse because it directly affects your human rights so hence FACES was formed to make certain we spread awareness to the stigma and discrimination as it relates to the disease sickle cell,” she added.
World Sickle Cell Day
World Sickle Cell Day is observed on June 19 and this year it is being celebrated under the theme ‘Together We Can.’ FACES is calling on the general public to assist in its efforts to ease the burden sicklers face by donating whatever they can.
“A lot of the sicklers are unable to work… because a lot of them are in crisis so often that they are unable to keep a job. They are already fighting to live so they shouldn’t be fighting to eat, for drugs, for clothing, those things should be accessible to you and this is why we went to this venture,” Michelle “Big Red” King said.
Big Red, a popular Guyanese singer, related that she joined FACES because of the sickle cell trait in her family. “She (Kazim) inspired me, she has been my neighbour for years and I think watching her not being able to live a normal life but fighting, and I am like I want to be a part of this and I feel like I had to do this,” added.
She pleaded with the business community and private citizens to come on board and donate whatever they can afford to as a means of assisting those sicklers who cannot earn because of their disease. She added that the organisation hopes to continue the initiative beyond World Sickle Cell Day.
Psychological effect
Kazim said that due to the stigma attached to living with sickle cell disease, persons are quite often tempted to take their own lives to ease the pain. “Sickle cell disease has at least a threefold part, the psychological, the socio and economical part. Psychological which does affect persons with sickle cell disease and recently at least one of our members tried to commit suicide because of all the trials and tribulations that is attached to this disease,” she informed.
She added that they are currently engaging the Social Protection Ministry so they would be able to alleviate the psychological pressures of living with the disease through regular counselling sessions.
King said as of now, the organisation offers support to its members through social media and face-to-face interaction. She added that they are working assiduously to ensure none of their members commits suicide and as such, the call for donations was resounded.
To commemorate World Sickle Cell Day, the Public Health Ministry will be hosting a health fair at the Stabroek Market Square.
