In our lifetime, we will see thousands of faces. Facial expressions can give hints about what troubles the heart and what makes it happy. A smile can indicate happiness or despair and a frown often leaves us wondering. Every face is unique and beautiful in its own way.
People with sickle cell disease are some of the faces we see every day. There are children, teenagers and adults battling this disease. But what is sickle cell?
According to Biological Science 1 & 2 (Third Edition), “The major characteristics of the disease are anemia and a tendency of the red blood cells to change shape (sickle) at low oxygen concentration. The sickle cells are useless and have to be broken down. They tend to jam in capillaries and small blood vessels and prevent normal blood flow.”
In Guyana, the people fighting this disease face many challenges. While growing up, I heard stories about sickle cell and it always appeared to be some sort of mysterious disease. You counted yourself lucky for not having it. At some point during my teens, I would have received an education in the form of a lecture about what having sickle cell meant but even with that I could not truly identify with what it really meant to live with the disease. The only people who really know the extent of the trials, fears and strengths are the ‘sicklers’ themselves and those who are closest to them. This was evident when I recently met with a group of folks living with sickle cell, from the organisation FACES (Fight Against siCkle cEll Stigma), which was formed in April of 2015 by Sabrina Kazim.
The group I met consisted of young women, who ranged in age from their early twenties to their forties, and they had no reservations about sharing what life was like with sickle cell. Most of them would have been diagnosed at an early age and spent years in and out of hospital. Their lives in school were not those of average children. They faced many limitations. They could not really participate in rigorous activities, such as physical education, and often felt left out. This was the experience of members of FACES although research has also shown that many children with sickle cell can feel well most of the time and lead relatively normal lives.
Adult ‘sicklers’ are often apprehensive when it comes to revealing their condition because they fear discrimination. There are times when people who were ignorant believed the disease to be contagious. But sickle cell is an inherited disease.
Privileges the average person may take for granted pose challenges for ‘sicklers.’ One such privilege is having children. Many are told not to have children. Women with sickle cell who desire to have children are told to do it while they are in their early twenties because the older they get the more likely they are to have complications. In some cases, women who became pregnant would have died. Anemia is no good in any pregnancy so one can imagine the plight of women with sickle cell anemia. There are, however, those who are lucky and have no complications.
There are two common types of sickle cell. SS is the most common type and occurs when the hemoglobin S gene is from both parents. SC is the second most common type, where the hemoglobin S gene is inherited from one parent and C from the other. With these two types of sickle cell, sufferers will experience a number of health problems but with SC anemia is less severe. People who inherit a mutated gene from only one parent are said to have sickle cell trait. They may have no symptoms or reduced symptoms.
Generally, people with sickle cell have to be mindful of the things they do. Any extended exposure to sunshine or rain could send them into a crisis. Doing exhausting activities could also send them into a crisis. Dehydration, cold and flu and even moods such as depression and emotions such as anger could also bring on a crisis. You might wonder what happens during a crisis. Fever, weakness, abdominal swelling, headaches, shortness of breath and unbearable pain are just some of what happens. This sends the individual into a state of emergency that requires access to medication as soon as possible. But even in the midst of such crisis, people with sickle cell in Guyana have experienced discrimination. Health care professionals would have told them the pain is in their heads. They are sometimes suspected to be drug addicts because the pain they feel requires narcotics, such as morphine and pethidine. At times, help would have been refused or delayed because hospital staff felt they were at the hospital too often. There are times when doctors would have treated them and then discharged them without enquiring if they were feeling better.
Experiences, such as the aforementioned, are what prompted Sabrina Kazim to start FACES. She realised that the fight is not just against the disease but also to get proper medical care.
Today, there are over forty members, comprising both ‘sicklers’ and ‘non sicklers.’ Their mission is to spread awareness using drama and workshops. FACES also serves as a support group. It has started making progress in partnering with health institutions to ensure that ‘sicklers’ receive the proper care they need.
Health Minister Dr. George Norton and CEO of the Georgetown Hospital Alan Johnson have also shown their support. Health care professionals, such as Dr. Godette and Dr. Beharry at the Georgetown Hospital’s Emergency Unit, have also been very helpful.
Most of us will not spend our lives frequenting hospitals. Most of us will never have to receive blood transfusions. We will not go blind or suffer hearing loss. Most of us will not have to leave our jobs because we are medically unfit. As a society we must be mindful and sympathetic to the struggles of each other. We must take time to not only understand the trials of groups like people with sickle cell, but also find time to help however we can.
June 19th is World Sickle Day and FACES will host activities in collaboration with the Ministry of Health and Guyana Sickle Cell and Thalassemia Association. Anyone who wishes to become a member of FACES can contact Sabrina Kazim on Facebook.
