Surviving Sickle Cell

By Venessa Deosaran

Having lived for 41 years with sickle cell disease, survivor and advocate Eton London repeatedly thanks a higher divinity for being alive today.
Sickle cell disease (SCD), according to the Centers for Disease Control and Prevention website, is a group of inherited red blood cell disorders. In SCD, the red blood cells become hard and sticky and look like a crescent-shaped farm tool called a sickle, hence the name.

People with SCD can live full lives and enjoy most of the activities that other people do. For those living with SCD, it is important to learn how to stay as healthy as possible; something London has been doing for more than four decades.
In an interview with Guyana Times Sunday Magazine, London said someone suffering from the disease must take their spiritual self seriously. “If you don’t believe in a higher being and believe only in medicine then you’re not going to last very long. I’m living proof because it is said those with sickle cell die very young, like in their 20s, and I’m now 41. I have 2 children and one on the way. I am convinced it is all due to a higher divine being. When one doctor was telling me not to proceed with a surgery, I was telling my doctor to do so. It’s not what the doctors say that will work; it is what God says that will work; and I believe in that explicitly. Believing in God is what carries you through,” he declared.
He was referring to the three recent surgeries he underwent for painful leg ulcers. London told Sunday Magazine, “…the ulcers are chronic; they never go away; they are always there.”
The ones he has are about six years old. Although painful and limiting his ability to walk, London goes to work every day. At times, he noted, he does not want to even think about them but because they are so severe, London’s doctor told him they have to be surgically looked after.
“Of course you don’t want to be a liability at your workplace, surgeries must be done. I’m thankful for the support I received from my workplace. Recently, I did three surgeries to avoid any infections of my ulcers. These ulcers sometimes heal up completely and occur again. You must believe in a higher calling. Additionally, you must have proper management of sickle cell; this means being very careful that you take your medications correctly. Dehydration is an issue too when you have sickle cell, so plenty water is important. Ideally, eight pints of water a day is good. Avoiding a cold environment is good too. Cold constricts the blood vessels and that is bad for people with sickle cell, because I have been to the seawall and leave there very sick, so now I always walk with a jacket in my car. Learn the trigger factors and avoid them,” he advised.
Tragically, Eton’s twin brother, Ewart, who also had SCD, died in 1996 at age 26 from injuries he sustained in an accident. London said his brother was very close to becoming a doctor: he had already completed his studies and medical internship. Ewart thought he and his brother would lead very long lives because he had the medical know-how to deal with the disease, but unfortunately he didn’t get the chance to fulfil his goals.
However, London is determined to carry out his brother’s goals of sensitising others about the disease. He has taken the reins in spreading awareness of the disease, and plans on doing what he can to encourage all to get early tests.

Sickle cell awareness
The Guyana Sickle Cell Association (GSCA) is a non-profit, non-governmental organisation registered under the Friendly Societies Act of Guyana. The association was registered in December 1999, but work by its members had started more than two years before. The office of the GSCA started out at the Jesus Rescue Mission Children`s Hospital Building in Georgetown.
In 1997, even before the registration of the association, persons with an interest in SCD, under the direction of Dr. Charles, then Director of the School of Medicine, University of Guyana, undertook a study to determine the prevalence of Haemoglobinopathies (abnormal haemoglobin) among babies born at the Public Hospital in Georgetown. The findings showed prevalence rates comparable with some Caribbean countries and confirmed the significance of SCD in Guyana.
Monthly educational meetings at the Nurses Association Hall provide opportunities for patients and health care workers to share experiences, information and give support. Initially, Dr. Linden Swan spearheaded these meetings, with assistance from the GSCA’s executive committee.
The GSCA has played an integral part in the formation of the Caribbean Organisation of Sickle Cell Associations (COSCA), established in St. Lucia in 1998. GSCA played an active role in helping this organisation to achieve its goal of improving the health care of SCD patients in the Caribbean region. The association has also been represented at many COSCA annual meetings held in various Caribbean territories.

GSCA’s current work
The GSCA has continued to provide services to the community, especially through education and public awareness campaigns. These initiatives are targeted mainly at those who have the disease, their families and health care professionals. The association believes that through effective education, it can achieve their mission statement of “Breaking the Cycle.”
Educational efforts have seen many members become more aware of themselves in terms of managing their condition: crisis avoidance and pain management, among other things. Educational efforts also target caregivers, as the association has recognized the importance of its ability to effectively care for children with sickle cell through a particularly precarious period of life.
There are also efforts targeted at doctors, nurses and other healthcare providers as the association has become aware of its shortcomings in effectively treating those with the disease. These efforts are seen as part of a larger attempt to establish standard treatment protocols in public health institutions nationally.
Additionally, the association has seen the continuation of its monthly meetings and the establishment of a Sickle Cell Clinic at Linden, Region Ten. These efforts have been accomplished primarily as a result of the efforts of health care professionals trained in sickle cell treatment in the United Kingdom through a partnership between the GSCA and the London chapter of the Association of Guyanese Nurses and allied professionals (AGNAP).
“We look forward to further efforts from our membership, greater partnership with the Guyanese public health authorities and greater synergies with partner associations further afield. I encourage those with sickle cell to know your limitations. Your goal is to live quality lives for as long as you can. Enjoy things that won’t make you sick and avoid those that will. I want everyone to go get early tests. It’s one test for your entire lifetime. There is a myth that only black people have the sickle cell trait. I debunk this because anybody can have the sickle cell trait, and the only way you know for sure is getting tested early. My encouragement is every baby born should be tested for sickle cell, and this requires efforts from the government. Knowing early means knowing how to deal with the disease effectively,” London urged.
Sickle cell trait is not the same as SCD. Sickle cell trait means you carry a sickle cell gene from one parent and a normal gene from the other, and it does not usually cause illness. To get SCD, you have to inherit two genes for the sickle haemoglobin, one from each parent. (Taken from Guyana Times Sunday Magazine)