Eight-year-old Aditya Ramlogan calmly puts on his sandals and all seems well until he stands and begins to walk. He walks with a slight limp and also on his toes. The young aspiring doctor has been diagnosed with hemophilia and his mobile infirmity is just one of the many fallouts from the condition.
His mom, Savita Ramlogan, had never heard of hemophilia until Aditya was diagnosed but she knew something was wrong a few months after he was born. She observed that her baby was having what she described as “black and blue marks” about his body but it was only after he was hospitalized to have a surgery done on an abscess that she found out the reason.
Today she is worried for Aditya and cries with him whenever he is in excruciating pain but her worry is now two-fold as her one-year-old son, Kushal, while not diagnosed, has been exhibiting signs of the condition. Her full-time job now is carefully watching both of her children in an effort to ensure that they do not injure themselves as the condition makes an individual injury prone.
“It is not easy. Sometimes I have to run around when the baby sleeping to make sure I finish the work in time because I don’t want to leave he alone and when we use to like go to the play park and so with Aditya he would become upset because he could not play like how the other children were playing,” she said.
Hemophilia is an inherited bleeding disorder in which the blood does not clot properly. This causes spontaneous bleeding, and/or prolonged bleeding after an injury or surgery. People with hemophilia have low levels of specific clotting factors, which are proteins in the blood that help it to clot. Persons with low levels of Factor V111 (Factor 8) have Hemophilia A, and those with low levels of Factor 1X have Hemophilia B.
The World Federation of Hemophilia (WFH) says that people with hemophilia do not bleed any faster than normal, but they can bleed for a longer time. Their blood does not have enough clotting factor, a protein in blood that controls bleeding. It was further stated that people with severe hemophilia usually bleed frequently into their muscles or joints and may do so one to two times per week. The bleeding is often spontaneous, which means it happens for no obvious reason. On the other hand, people with moderate hemophilia bleed less frequently, about once a month. They may bleed for a long time after surgery, a bad injury, or dental work. They will rarely experience spontaneous bleeding. People with mild hemophilia usually bleed as a result of surgery or major injury. They do not bleed often and, in fact, some may never have a bleeding problem.
Hemophilia is quite rare; about 1 in 10,000 people are born with it. The WFH’s Annual Global Survey surmised that with Guyana’s population of approximately 755,000 persons, an average of 52 persons could be living with and suffering from Hemophilia.
The Guyana Hemophilia Society (GHS) is extremely concerned that to date there are only 15 confirmed cases in Guyana.
Hemophilia A Severe
Aditya has severe hemophilia, which has resulted in him suffering from frequent injuries, including once to his ankle when he fell off a child’s scooter at the age of three.
“It was just a little something but it was bleeding so much and then in the night he would cry because of the pain and it would get you so frustrated because you can’t sleep or nothing… I know he was in serious pain. I can’t explain and I don’t know how he does bear it,” his mother said.
In Grade One, a bench fell on his foot, just around his ankle and the swelling eventually formed an abscess. He was admitted to Georgetown Public Hospital (GPH) and the bone specialist later informed that because his foot rested in one position on the bed for an extended time it needed to be placed in a cast — an orthopedic device that supports broken, fractured or injured bones and joints in the ankles and feet. The foot was in a cast for a while and when it was taken off Aditya was walking on his toes. His mother was told that the only way to fix this was for the bone to be repositioned, which meant another cast. But because of his condition, she did not want to take the risk of him returning to theatre.
He now walks on his toes on both feet. The instep of his left foot, which was cast, is stiff and painful whenever he attempts to walk normally, thus it is easier for him to walk on his toes.
Ramlogan shared that sometimes her son would be laid up in bed for a month at a time whenever there is swelling to one of his joints.
“He used to miss school a lot before COVID-19 but he is still an A student because I work with him a lot,” she said.
People with severe hemophilia are more prone to internal injuries when they exert themselves. This occurs in the joints: knees, ankles, hips and shoulders, mostly where weight of the body is felt.
Ramlogan recalled that when he was eight months old one side of his buttocks started to swell and he cried relentlessly and stopped eating. A doctor’s visit diagnosed an abscess and a surgery had to be performed. This was done at a private hospital and Ramlogan said while they were told he bled excessively no reason was given. “They just stitched him up and clamped him and tell we to go to public,” she added.
“I remember the night after the surgery he was in recovery and when I wake up the whole sheet was blood and they called back the doctor and he eventually said he have to go back in the theatre to check it out,”
Four days after the surgery he was transferred to the GPH. He was given blood and the next day, the family was questioned about medical history and whether anyone had a bleeding problem. Ramlogan’s mother was there and she explained that her father had had a bleeding problem. The doctor indicated that Aditya may have hemophilia.
“I never heard it before and I think it was something he would grow out of it. I thought it was not serious. I thought it could be treated. But is when I take my phone and I Google it, then I understand and I start to cry because for me, is like this can’t come back and it is like somebody born without an ear or a finger or something. That is how I see it,” she said, tears streaming down her face at this point.
As his mother spoke, Aditya listened quietly from afar without interrupting. He later said when questioned that he wished the pain would go away.
Ramlogan was told that Aditya’s Factor V111 (eight) was missing which meant he had a severe form of the condition. His severe diagnosis was made at around the age of seven and Ramlogan said they were warned that they could not beat him and he had to be watched all of the time.
Aditya was hospitalised for about three months and before he was discharged his parents were warned that he would continue to have black and blue marks and his joints may swell.
At the age of three he jumped from a bench and one of his knees started to swell. They were later told that the jump caused a shock resulting in the swelling, which lasted for one month.
Ramlogan said sometimes his mouth would bleed and when it is excessive she takes him to the GPH. She lamented that often she sits with her son as he bleeds for long periods before he is attended to. She was advised to always feed him green leafy vegetables because of the amount of blood he loses.
Ramlogan’s world changed when she read about the GHS on Facebook and contacted the society. She learnt more about her son’s condition and has received tremendous support.
Even at that point she was still in denial as she wanted to believe that her son did not have the condition. She also felt guilty as from her reading she learned that most times it is women who pass the condition on to their children.
“I would sit and cry and cry because I feel so guilty,” she said, tearing up again.
According to the US Centers for Disease Control and Prevention, a father who has hemophilia passes his X chromosome to all of his daughters, so they have his hemophilia allele and become heterozygous (carriers). A father passes his Y chromosome to his sons and thus cannot pass the hemophilia allele to them. Without the hemophilia allele, the sons therefore cannot pass it to their children. Hemophilia is more common among boys, as they only inherit one X chromosome, which means that they will develop symptoms of hemophilia if that chromosome carries the mutation.
Because she is the carrier, Ramlogan said, it sometimes creates conflict in her marriage especially when Aditya is in severe pain and finds it difficult to sleep or play.
“And what does get to me too is when he would go to school some children would watch him and laugh because of how he walks. Even when we go out, sometimes people would look at he or come and ask questions. Sometimes you don’t even want to go out,” she said in tears.
Her second pregnancy was not planned and Ramlogan said while she hoped it was not a boy, she never considered the option of aborting her child.
Kushal was about eight months old when the first black and blue mark was observed and Ramlogan said she was brokenhearted.
“I started to take extra care because I didn’t want him to go through what Aditya went through…,” she said.
Kushal, who will be two shortly, has not yet been diagnosed but his mother is certain that he has hemophilia.
“I just thank God for the Guyana Hemophilia Society and the WFH, that I getting the medication for him,” she said.
While in the past she travelled to a clinic to have the needed injection administered, that proved to be very costly as she had to use taxis. Now she administers the injection to Aditya herself.
The Factor V111 injection is donated by the WFH through the GHS and Ramlogan stores it in her refrigerator.
“Sometimes he does cry because it is so painful to get injections all the time. I try boring myself once. It was so hard. I don’t know how he bears it. It is hard. When I tell you it is hard, it is really hard. But I thank God that from going to hospital I see people with more severe cases and I actually now accept what he have,” the young mother of two said.
She called on the Guyana Government to do more for people living with hemophilia, especially in providing the needed injection which should they have to purchase on their own would be very expensive. Additionally, even if they have the money they would be unable to access the injection on their own.
Fact Box: The Guyana Hemophilia Society
The Guyana Hemophilia Society (GHS) was unofficially organized in 2014 by a family group – two hemophiliacs and one non-affected – whose wider families struggled to get adequate and appropriate relief and highlighted their challenges wherever and to whomever would listen and provide support. While desperately seeking medication in a country where there is no official Hemophilia Treatment Centre, the group quickly recognized the need to network among health professionals and the interested public to highlight the problem of hemophiliacs and to seek out and reach other unknown cases.
After three years, in 2017, the GHS was formally established and registered. Since its official launch, the GHS – under the motto “Strive to Stay Alive” – has been working with the World Federation of Hemophilia to achieve its vision of “Treatment for All”. Its mission is to educate, train and get much-needed treatment for hemophiliacs. Therefore, the society’s focus is to join forces with other hemophiliacs in the country and across the world to strengthen efforts in highlighting their situation in Guyana so as to create an enabling environment for the affected and their families through appropriate strategies, such as data generation and analysis for evidence-based advocacy and public sensitization for policy development, and establishment and maintenance of minimum standards for procedures, treatment and care for hemophiliacs.
Moreover, if Guyana is aiming to reach the Global Goals by 2030 – specifically Sustainable Development Goals (SDGs) 1, No Poverty; SDG 2, Zero Hunger; SDG 3, Good Health and Well Being: SDG 4, Quality Education for All SDG 5, Gender Equality; SDG 8, Decent Work and Economic Growth; SDG 9; Industry, Innovation and Infrastructure; SDG 10, Reduced Inequalities; SDG 11, Sustainable Cities and Communities and SDG 16, Peace, Justice and Strong Institutions – the situation of hemophiliacs in the country must be known and adequately addressed. It is the hope of the GHS that its efforts will become a major contribution to Guyana’s progress towards these 2030 goals.
To date, the GHS has engaged in sensitisation sessions, including interviews on national television and radio; attendance at international conferences, which has widened the knowledge base and vision for the local organisation; fund-raising activities; and establishing an office. This space is loaned to the society, which has 42 members with a diverse team including medical professionals. The lack of data and documentation of the prevalence and plight of hemophiliacs coupled with limited knowledge base nationally further compounds the crisis as policies for creating an enabling environment are non-existent and seemingly distant.
The situation is critical as with less than 30% known cases of the estimated bleeding disorder community, the remaining 70% are further marginalized and at greater risk of not meeting their full potential and contributing positively to society. It is this unmet need — the absence of adequate socio-economic support — that the GHS aims to address through its broad-based advocacy targeting policy makers. The GHS can be contacted on telephone number 592-674-3263, or email address guyhemophiliasociety@gmail.com, or on Facebook.
