Growing up was challenging, as I had to constantly worry about when my next bleed is going to occur. Being placed on on-demand treatment regime means, I had to experience bleed first before I receive factor infusion, and as a person with severe Hemophilia A, I was never short of 1 bleed in a week during my childhood.
Thanks to the advancement of treatment and care in Malaysia, I benefited from prophylaxis treatment from age 22 onwards which significantly reduced my bleeding episodes, and now I am able to lead a healthy and an active lifestyle.
I hope and pray (and will be working hard too!) that more PwBDs will be able to enjoy the best possible treatment and care towards better control and prevention of bleeds.
Happy World Hemophilia Day!
Hi there! My name is Francisco Antonio Calderón, and I want to share my story with you. At the age of 5, my life took an unexpected turn. While playing with my older brother, I had an accident that changed my life forever. I was diagnosed with hemophilia, a condition that affects blood clotting. At first, I didn’t fully understand the severity of the situation, but soon I realized that my life would never be the same as my classmates’.
Hemophilia prevented me from participating in sports normally and doing many of the things that kids my age did. I felt different and isolated. Sometimes, I was the victim of bullying by my peers, who didn’t understand why I couldn’t do the same things as them.
That’s when my parents decided to change my school. At first, it was difficult to adapt to a new environment, but soon I realized that this was an opportunity to start anew. I discovered that I had skills that my classmates admired, such as my ability to lead and motivate others.
I was elected president of the student council in my new school, and this experience changed my life. I learned a lot about leadership and discovered that I had the ability to inspire others and make a difference in the world.
After graduating, I studied a degree in Design, but I always had my true passion in mind: to help others who, like me, live with hemophilia. I started using social media to spread information about the condition and make it more visible to the general public. Today, through my Instagram account (@FactordeCoagulacion), I share my story and that of many others who live with hemophilia.
My ultimate goal is to study Journalism and create a foundation to help people with hemophilia in Chile. I know there is still much work to be done, but I am determined to make a difference in the lives of those who live with this condition. Thank you for listening to my story!
¡Hola! Soy Francisco Antonio Calderón, y quiero contarles mi historia. A los 5 años, mi vida dio un giro inesperado. Mientras jugaba con mi hermano mayor, sufrí un accidente que cambió mi vida para siempre. Me diagnosticaron hemofilia, una condición que afecta la coagulación de la sangre. Al principio, no comprendí del todo la gravedad de la situación, pero pronto descubrí que mi vida nunca sería igual a la de mis compañeros de colegio.
La hemofilia me impedía practicar deportes con normalidad y hacer muchas de las cosas que los niños de mi edad hacían. Me sentía diferente y aislado. En ocasiones, era víctima de bullying por parte de mis compañeros, quienes no entendían por qué yo no podía hacer las mismas cosas que ellos.
Fue entonces cuando mis padres tomaron la decisión de cambiarme de colegio. Al principio, fue difícil adaptarme a un ambiente nuevo, pero pronto descubrí que esta era una oportunidad para empezar de nuevo. Me di cuenta de que tenía habilidades que mis compañeros admiraban, como mi capacidad para liderar y motivar a otros.
Fui elegido presidente del centro de alumnos de mi nuevo colegio, y esta experiencia cambió mi vida. Aprendí mucho sobre liderazgo y descubrí que tenía la capacidad de inspirar a otros y hacer una diferencia en el mundo.
Después de graduarme, estudié Licenciatura en Diseño, pero siempre tuve en mente mi verdadera pasión: ayudar a otros que, como yo, viven con hemofilia. Comencé a usar las redes sociales para difundir información sobre la condición y hacerla más visible para el público en general. Hoy en día, a través de mi cuenta de Instagram (@FactordeCoagulacion), comparto mi historia y la de muchos otros que viven con hemofilia.
Mi objetivo final es estudiar Periodismo y crear una fundación para ayudar a las personas con hemofilia en Chile. Sé que todavía hay mucho trabajo por hacer, pero estoy decidido a hacer una diferencia en la vida de aquellos que viven con esta condición. ¡Gracias por escuchar mi historia!
My name is Rana Asad Ali, I am 19 years old and I have spent 19 years of my life with many difficulties. Once I got injured there was a lot of bleeding and at that time I did not know about hemophilia Then in 2016 my left arm bone was broken two operations were done, due to which I was bleeding a lot my family used to pay for the blood and due to the daily injury I could not even study properly I did intermediate and when my arm was operated for the third time someone told me about hemophilia and then I joined the hemophilia society Lahore and thanks to God I am fine till now.
I have inherited Factor V Leidon from my paternal line; my father has Factor V Leidon and activated Protein C deficiency, which he inherited from his father, which he inherited from his mother. All of whom suffered DVT’s at one point in their lives.
As a teenager, when my father had a DVT, I went to my GP and asked to be screened. When the results came back, I wasn’t told I had a specific “condition”, I was only told that my blood was “a little stickier than normal” but that it was nothing to worry about.
A few years down the line, it turns out it was something to worry about. It was when I was pregnant with my first son at the age of 20 that the midwife told me that I had Factor V Leidon. I would need to be consultant lead and would need to inject daily with Enoxaparin. As I had found out about the pregnancy quite late anyway, I didn’t start injecting until I was around 17 weeks. At 22 weeks we found that the baby’s growth was restricted due to lack of blood flowing through the placenta. At 24 weeks I was diagnosed with severe preeclampsia and admitted to hospital, being told that I wouldn’t be leaving until the baby was born. At 24+1 weeks, I developed HELLP syndrome and my organs started to collapse. I was given magnesium transfusions to protect my brain from any eclamptic seizures, before being rushed to theatre to deliver the baby. My platelets were so low that I was close to haemorrhaging. Our son was born on Christmas Eve 2014, at 24+1 weeks, weighing 480g. Despite being so premature, he was still much smaller than he should have been, indicating that the blood flow had been restricted for some weeks before I was diagnosed with preeclampsia. My life was very much touch and go for a few days; I wasn’t allowed to move out of bed, I was on large amounts of morphine and magnesium, having my bloods taken every 45 minutes to check my platelets (which were continuing to drop) and my liver enzymes (which were continuing to climb). I was getting worse before I was getting better. We had a very traumatic month over Christmas and the New Year, being transferred from hospital to hospital and surgery, all whilst I was still incredibly unwell and recovering from organ failure. Ultimately, our son’s prematurity resulted in his passing at 33 days old, on the 25th January 2015. We had some very difficult conversations with various specialists and made the heartbreaking decision to stop his life saving care, as everything that was being tried, didn’t have a good prognosis and it wasn’t looking likely that anything would be able to help him.
There is nothing for certain to say that the Factor V Leidon had caused the preeclampsia, however, there is a link. There is also nothing to say that beginning the injections any earlier would have prevented the preeclampsia and improved blood flow, but there is a chance.
It was decided that after such a risky pregnancy and complicated birth, any future pregnancies would be consultant lead from the very beginning. This put me at ease, slightly. I was told that I had no control over whether or not I get preeclampsia again because of the Factor V Leidon being a risk factor. Also, once you’ve had preeclampsia once, you are more at risk of it developing again. I was told that I just needed to make sure my body was as healthy as possible before I considered another pregnancy.
I overhauled my lifestyle completely to have another baby. I was in the gym, I was eating sensibly, and in the space of a year I had lost 5 stone.
It was now Spring 2016 and we decided we would try for another baby and I (very luckily) fell pregnant the same month. I was straight on the aspirin, folic acid, eating sensibly, still exercising lightly. I felt much better in this pregnancy and a lot more relaxed than I thought I would. My mother in law was a midwife, so I asked her to be my midwife, especially in those early stages. She referred me to a consultant straight away and a plan was put in place to begin Enoxaparin as soon as possible. We went away to visit family in Wales for the Augsut bank holiday, but the morning we got up to leave, I had stomach cramps and noticed a small amount of blood. I knew that spotting was common, especially in early pregnancy, so tried not to worry too much. The cramps didn’t ease off all day, despite painkillers. We weren’t planning on telling the family we were visiting; I wasn’t showing and was feeling good so knew that I could hide it for a few more weeks.
In the night, around 11pm when everyone was in bed, the cramps woke me up. I sent my husband to get me some painkillers and make me a hot water bottle. I was on my hands and knees in the bedroom, rocking with the pain. I’ve never felt anything like it. When my husband turned the light on, he says it was like a horror film. There was so much blood. I knew for sure that I was miscarrying. We snuck out the house around 2am, not wanting to explain anything to my family, and headed to A&E. Because it was the bank holiday, staff at the hospital were in short supply. I had wrapped a blanket round my bottom half, but the hospital was 40 minutes away, having to drive off Anglesey and to the mainland. By the time we got there, the blood had also soaked through the blanket. Triage could see what a state I was in so did get me seen pretty quickly. I was seen by a doctor, who didn’t need to explain much. They said I was likely miscarrying, but I would have to wait until the following Tuesday to be scanned at my local hospital. They told me to continue with the painkillers and to rest, and it would pass in a few days. By now, it was morning, and I had texts and missed calls from my family who had obviously woken and seen that our car was gone and wondered where we were. We got back around 10am and had to tell them what had happened. Not how we expected to reveal our pregnancy at all. But I was covered in blood, my clothes needed washing, I needed a shower, and I just needed to sleep and cry.
Again, it isn’t guaranteed that the Factor V Leidon caused that miscarriage, but there is a strong link. I also had to be monitored by midwife (mother in law) to ensure that I didn’t clot over the next few days/weeks. When we got home the following week, we went to the Early Pregnancy Unit at our local hospital, who did an internal ultrasound and confirmed that there was no heartbeat. As I was around 12 weeks along in my pregnancy at the point of miscarrying, it took around 3-4 weeks for me to pass the foetus and eventually stop bleeding.
We decided that I would give my body and mind a chance to rest and recover, so we put another pregnancy to the back of our minds. I started taking contraception again, for a few months. But then December that year, we felt the time was right. I fell pregnant again very quickly, but unfortunately, this time wasn’t meant to be either. Something just didn’t feel right. I had cramps again but knew that I was only very early, so they could have been implantation pains. But my pregnancy tests were getting weaker. I went to the Early Pregnancy Unit again, the day before my birthday. They did an internal ultrasound and confirmed that there was nothing there.
I was now 23, had one son who had died, and 2 subsequent miscarriages. I was told that they would only run further tests and investigations if I had a third miscarriage. The fact I had already lost a son preterm, didn’t matter. Again I was told that there is a link between Factor V Leidon and recurrent miscarriages and preeclampsia.
Only a couple of weeks after that 2nd miscarriage, I fell pregnant again. On Christmas Eve, our first son’s birthday. Because of my miscarriages, I struggled to enjoy this pregnancy. I pretended I wasn’t pregnant. I didn’t want to become attached incase I miscarried again. I carried on running, going to the gym, weight lifting, eating and drinking what I wanted, squeezing myself into jeans that didn’t fit because of the bloat. I didn’t tell my mother in law this time, because I knew that she was finding it hard seeing her son and daughter in law going through this, and she was having to stay professional. I made contact with the community midwife and was referred to a consultant straight away. I turned down the offer of early scans, with a view that, if something is going to happen, it’s going to happen and I can’t change it. I began Enoxaparin injections quite soon. I was doing everything I should have been doing to look after this growing baby, despite not wanting to believe it was there. But week by week, I was still feeling good. I was nauseous and tired, but that was all. I took this as a good sign, that my body was doing what it should be doing to help grow this little baby. I had a dating scan at around 13 weeks and sobbed when I heard the heartbeat and that baby was growing fine. This was probably the moment I started to actually think about having a real baby. Then the anomaly scan at 20 weeks, which is the scan I was most worried about. This was the point that we found out with our first that his growth had been restricted. But everything was fine. And every appointment I had with the midwife, there were no signs of preeclampsia.
We announced this pregnancy to most of our family at around 20 weeks, when I knew I was now at the halfway point and we had started to get excited ourselves. I was still very cautious of getting preeclampsia so was doing all that I could to avoid it; eating the right foods, exercising as I would normally, avoiding as many of life’s stresses as I could like not rushing around to get to places or worrying about things that didn’t matter.
This time, I got Symphysis Pubis Dysfunction at around 30 weeks, so was in a lot of pain. I stopped exercising and chose to swim instead. I was wearing a support belt and having physio. Eventually, at around 32 weeks, I had stop working as I was now just struggling to get out of bed. My blood pressure had started to creep up so was now being monitored daily, but there were no concerns about preeclampsia just yet.
At 34 weeks, the Braxton Hicks I th0ught I was having, suddenly got worse in the night. I called my mother in law the next morning, who had a gut feeling as soon as she arrived that something was happening, and she told me to go straight to the hospital. I didn’t quite appreciate the urgency so took myself off for a shower, my husband started building the cot “just incase”, I took something out the freezer for tea so we could cook when we got home later, and we arrived at the hospital at 3pm. I had no protein in my urine and my blood pressure was only slightly elevated, so they still weren’t worried about preeclampsia. The baby’s heart rate was monitored for 22 minutes before a consultant came to me and said “I think we need to bail out now”. His words exactly. Because the C-section I had previously was so premature, I had already been told that I would never be allowed to give birth naturally. And because of all my risk factors now and it putting too much pressure on my organs after the HELLP syndrome, they didn’t want my early labour to develop any further into active labour, so I would need to go for an emergency C-section now. The baby had been growing fine until this point and there were no concerns about him now that I was 35 weeks, but I should be prepared that he might need a little help and he is likely to be on the small side. I was warned of the dangers due to my previous obstetric history and of the Factor V Leidon and I was whisked down to theatre. Our baby boy was born on 19th August, 5 weeks premature, just 2 hours after being admitted to hospital. We named him Ezra Jude, which is Hebrew for “helper” because we knew he would be the one to help heal our broken hearts, and Jude was our first son’s name.
Whilst everything seemed to have gone well, we were monitored closely. I was put on antibiotics for sepsis as a precautionary measure and had regular bloods taken. Despite there being no concerns about preeclampsia and it looked like I had just gone into spontaneous early labour, the blood results showed that my liver enzymes were climbing and my platelets were dropping, which are 2 factors of HELLP syndrome. It is now thought that preeclampsia and HELLP syndrome was on it’s way again, but my body acted fast to get the baby out before it got too late again.
Ezra had severe jaundice and his blood sugars were low, so we were told we had to stay in for a few days longer than normal, until both our blood results showed improvements. Ezra was taken to neonatal intensive care for phototherapy treatment for his jaundice. The PTSD I had developed after our first son’s birth and death was triggered at this point. I was in hospital on my own (my husband went to work in the day whilst we were still in hospital) and my baby had been taken to NICU. I found myself detaching myself from my baby. When it came to feeding him, I just wanted to feed him and hand him back, not wanting to bond with him “just incase”.
Then I was told that he had an infection, but they didn’t know where it had come from. They were treating him with antibiotics and monitoring him, he needed a platelet transfusion and would need to stay in NICU. They asked to take blood from all of us and they were sending it off to specialists at Great Ormond Street Hospital for testing.
The results never came back in time whilst we were in the hospital, but the platelet transfusion and the antibiotics seemed to have worked. I managed to get his blood sugars up with what seemed like constant feeding, so they were happy to discharge us at 10 days old. He’d dropped a little weight and was now only 4lb 2oz but was doing well, so we went home at 10 days old, on the August bank holiday of 2017. Exactly a year to the day that I had miscarried.
Ezra had severe jaundice for a few months so we had several appointments with the hospital. He also had severe reflux which is common in preterm and small babies. At one of these appointments to discuss treatment for the reflux, the paediatrician told me that they had received the blood results back and they had detected that I had Anti HPA-5b antibodies, another blood condition. In short, my blood was not compatible with Ezra’s, so my body had begun to effectively fight off Ezra in the womb, which was why he was so poorly and showed signs of infection when he was born. My blood cells will attack these HPA antibodies if it comes into contact with them.
So with this 4th (and final) pregnancy, I began my Enoxaparin injections much earlier which may have been why I managed a healthy and much longer (although still preterm) pregnancy. If there were any future pregnancies, I would now also need monitoring to ensure that the Anti HPA-5b was not going to harm another unborn baby, and so that measures can be put in place in those later stages of pregnancy to ensure that we both have the right transfusions at the time that we needed a C-section.
Our little boy is now 5 and a half and is thriving. His prematurity and poor health in the beginning has had no effect on his development.
Myself on the other hand, am traumatised by not only the events of the last few years, but the treatment. I am constantly wondering if I had known about me having Factor V Leidon, would that first pregnancy have been any different? Instead of my GP telling me it was “nothing to worry about”. I know that Factor V Leidon isn’t anything to worry about on a daily basis, but it is something to worry about during pregnancy.
Up until very recently, my Factor V Leidon wasn’t a problem. I had to inject with Enoxaparin or Clexane if I went on a long haul flight, and take aspirin if I was going short haul or on a long drive. I know the importance of keeping hydrated to keep my blood thin.
At some point since Ezra’s birth, I have developed Cushing’s disease. Something incredibly rare (0.002% of people are diagnosed). This could be “just one of those things” however, it is the over production of the stress hormone, cortisol, caused by a tumour. There are links between Cushing’s disease and PTSD and over exposure to stress. Cushing’s also causes high blood pressure, diabetes, weight gain and increased risk of blood clots. So I now have another risk factor, on top of the Factor V Leidon.
Christmas 2022 I wasn’t well, overall for around 8 weeks, beginning in November. I thought I’d just picked up that nasty winter virus that seemed to be going round. Despite my PTSD and health anxiety always catastrophising any illness, for some reason, I tried to ignore whatever this was and just carry on as normal. Then in January 2023, one morning I just knew something wasn’t right and, although I still thought I was being dramatic, I rang 111. I had been having chest pain, I was coughing, but over the last few days, I was just really struggling to breathe. They made an emergency referral to A&E and told me to be there within the hour otherwise they would send an ambulance.
My husband took me in, and within minutes of walking through the door, I was on oxygen, I had an ECG, I’d had a Covid test, I was on IV antibiotics for sepsis and IV fluids, and I was being prepared for blood gasses and a CT scan.
Within just a few hours, I was diagnosed with “numerous severe and massive bilateral pulmonary embolism”. My lungs were apparently riddled with large blood clots. And a chest infection on top.
Every doctor I spoke to asked the same questions; have you been on a flight or long car journey? Is there a family history of blood clots? I had to explain everything, and they would read my extensive medical notes, and it would all make sense.
I injected with Enoxaparin for the first 3 days of my hospital stay. Eventually I began to breathe normally and I was taken off oxygen, and they changed the blood thinners from injections to oral tablets. I was kept in for 5 days until they told me that I was well enough to go home. I was petrified to go home, I begged them to keep me in. I was terrified that something was going to happen to me at home again; a hospital stay had been the biggest trigger of my PTSD in a very long time, and I really didn’t know how I was going to drag myself out of this mental low that I had found myself in. They explained that the blood clots would take a few months to dissolve, I might still experience some chest pain and some coughing, but that I was on a high dose of blood thinners and it’s highly unlikely that I’m going to form another clot whilst I’m taking them. They had to remind me how I poorly I was when I first went in, and how much better I’d got in the 5 days. They sent me home and just told me to rest.
Now, 3 months later, I’m still on that high dose of blood thinners. I still get the occasional bit of chest pain and I have to remind myself that it’s normal, rather than convincing myself that it’s something sinister. I will have a scan on my lungs in May (4 months after the clots) to see if they’re still there. Depending on what that scan shows, they may be able to reduce my dose of blood thinners, but regardless, I will be on them for the rest of my life now. If the scan shows that the clots have gone, my treatment for Cushing’s disease can also resume and hopefully they will book a date for the surgery to remove the tumour (surgery was always the plan but having a PE put a stop to it!).
Whilst I always thought that having a clotting disorder wouldn’t be a problem day-to-day, it has proved over the years that it is going to be a problem. I will have to take blood thinners forever; I carry alert cards around with me, just incase something happens and people need to know how to treat me; I struggle to get life insurance and travel insurance.
All for something that I inherited, and is completely out of my control, no matter what kind of lifestyle I live.
“Hope is being able to see that there is light despite all of the darkness.”
Life is not a bed of roses, it is a journey where one has to pass every dark, shiny, rough, and tough path. It depends on an individual how one goes through this journey. Here begins my journey to this date.
I am Midhat Khalid currently doing BSc in Psychology from Government College University, Lahore (GCUL). I am patient of Von Willebrand Type II. I am the youngest and third-born child of my nuclear family. I was diagnosed at the age of 2 with this disorder when I fall from the window. I got stitches on my face but still, it bleeds. At the suggestion of the doctor, I got tested and was diagnosed. Then my parents took me to the Hemophilia Patient Welfare Society (HPWS)- in Lahore. Here I met Dr. Shahla and got registered here as a patient. As a child with a bleeding disorder is not an easy task especially when your elders are normal children and you have no family history of this disorder.
Since my childhood, I was given extra attention and protection. Being a girl with moderate VWD means, I had to take care of myself at every step. Dr. Shahla always asked my parents to not compromise on my studies as she saw my thirst for studies and knowledge. Since my childhood, I was a shy child who avoids gatherings, late night shopping ( though I am a girl) and always indulged in studies. I did my O-levels and got admission to Lahore College in FSC Pre-medical. Throughout my schooling, I tried my best to not get injured. Only one of my teachers knows about this condition and even I hide this disorder from my friends.
In my college, I used to drink cold coffee so much. As a result of which I got severe menses and my HB dropped to 5. On my last pre-board, I got treatment. On 1st January 2020, I was infused with blood and the very next day with iron. Iron reacted and my blood pressure shot to 250, I was jumping on the bed and there I can say I saw death closely. I was given anti-allergy and after hours I became conscious. From then oral medication for maintaining Hb becomes part of my life.
July 2016 was the turning point for me. I started to participate in meetings and workshops of my society. Dr. Shahla always says that every patient should own this disorder, and never try to hide it. It is our special ability from god. On following her saying, I started to work for my bleeding brothers and sisters. Now I am confident enough to tell everyone that I am a person with a bleeding disorder. My engagement in society increases and now, I am an Executive board member of HPWS, I also got elected as an Executive member of the Hemophilia Foundation Pakistan (HFP), a Youth leader of the Lahore chapter, a youth member of a National youth group, representative of the Lahore chapter on national and chapter level women group. In all these achievements and struggles my parents and siblings are always by my side.
As a psychologist, I also want to serve my society and do something for my blood brothers and sisters. I have a high ambition to serve humanity and will try my best to do something for my country. I want to make my parents proud and fulfill their wishes and dreams as all my success is just because of them. My dream is just to show that a person with a bleeding disorder can do anything all one can need is just precautions.
In the end, I just want to say we should not feel it as a burden and curse from god. God makes us special as he selects us to serve humanity, he wants us to become aware of the pain of humans, and how to become one in others’ pain. All we need to learn is never to lose hope as there is light at the end of a dark tunnel.
Happy Hemophilia Day!
“No matter how long the night is, the morning is sure to come”
I don’t know how to right a story but I will share my short story in my own words. In my point of view hemophilia is the same life with extra hard struggle, which gives you extra skills, extra strength and extra patience. In my birth my parents knew that I have some weird abilities hahah yeah joke! Which ruined my whole childhood.
After all those historical Lockdown days of the world, people understand how you feel isolated in your schools, in your home, in your Eid/Christmas. That’s what I feel for past 15 years of my life with Deficiency of Factor VIII. But in hemophilia’s isolation gives you strength and safety, which prevents Joint Deformity. That’s what I learn!
I remember the night when I was 14, crying a whole night because of severe knee bleed. My father tried every game to change my mind from the pain but nothing worked! And hopelessly said Son: I can not take your pain! And literally he tried everything but “No matter how long the night is, the morning is sure to come”.
After all those non aware years of hemophilia I heard about some hemophiliac communities which are working on hemophilia . I start searching about these communities which are working for themselves. And then I met someone in 2013 who said I have some planes. And we start building a hemophiliac team and then we start monthly meetings, awareness and advocacy with government and government hospitals. I got the first Factor VIII injection from our HTC in 2014. Then finally I got opportunity volunteer on both National/International. Currently I am working as a National Youth Group Member of Hemophilia Foundation- Pakistan.
I got the fully funded scholarship for BS education in 2017 and after four year I completed my Bachelor degree in Agriculture.
MY PASSION FOR HEMOPHILIA
One and a half decades ago, my son was born (now 16yr old, a high school student). He grew up like any other boy in good health until when he sustained an injury to his upper gum while chewing sugar cane. It was a horrible experience before my son could recover back.
Since his birth, her mother could discover unusual lump swelling beneath his skin as she applied jelly to his skin. At times she could accuse her elder sister of bullying him when she is not around. I remember one day giving corporal punishment to my daughter for these allegations from her mother. The issue of his swelling came to our attention when he developed a larger swelling on his belly that gave us sleepless nights. By then l had acquired an internet-enabled phone which l could google and check for possible causes.
I remember landing on an article that directed me to the Facebook page of a certain Indian guy who was trying to talk something about Hemophilia and its symptoms. His article made a mark on my mind and from that day l started doing a lot of research to know more about what could be ailing my son.
It was until when he got an injury on his gum that the journey to face and know hemophilia started. The day this incident occurred, l and my wife were around and we took an assumption that, as usual, his bleeding would stop. Her mother could wipe the oozing blood from her mouth without paying attention to the continued bleeding. After dinner in the evening, her mother carefully laid him on his bed.
The night was as usual until 6 am in the morning when we discovered bloodshed in his beddings. It was horrible! His face was full of blood and he could not talk because blood had clotted in his mouth making a “lump” making it impossible for him to talk. With the little wisdom we had, we managed to extract that lump of blood from his mouth and opted to take him to Kakamega General Hospital where he was examined and we went back home with sylate tablets as prescribed by the clinician.
Things didn’t work, the following day, it was much worse and we resolved to go to a private hospital where he was hospitalized for being anemic. On the fourth day of his hospitalization, l received a phone call that urgently required me to transfer my son to Kisumu for a blood transfusion, by then l was at my place of work. May God bless Dr. Kedaha for this quick conclusion. Before we could leave the hospital, the doctor gave us a transfer letter to Obama children’s Kisumu JOOTRH that called for a coagulation test to show the clotting time of my son’s blood.
At Kisumu, Obama children were another nightmare to get blood for transfusion. It was then that l came to learn that, donating blood voluntarily is more important. I had donated blood at Kakamega before leaving but unfortunately because of the condition of my son that required urgency, the blood could take more time for screening for it to be ready since there was none at the blood bank.
My son situation continued to worsen, her mother had no hope, but God never fails. It was on Thursday morning when a team of doctors and medical superintendent were on a normal routine checkup for patients, came across my son and a madam in civilian with a label on her chest “Med sup” went through his file and inquired why My son hand not been transfused with blood. The conversation that followed was if l has ever donated blood voluntarily. My answer was that l donated blood at Kakamega for my son a statement that irritated her mind. “you are selfish, when people volunteer to donate blood … you feel it is a waste… now whose blood do you want to be given to your son…? “These words were too harsh for me considering the situation of my son. But finally, my son received blood in the evening, and his eyes that had stayed closed opened.
This gave us hope as we struggled to let him bite his favorite fruit sweet banana. A few days later, we have discharged with a clarification that my son’s clotting wasn’t normal. We were then referred to book a clinic near our residence of which we opted for Dr. Kedaha’s clinic, who later referred us to Kenyatta National Hospital where my son was diagnosed with hemophilia A severe. My son resumed his normal health gradually although his memory was affected such that he could not name objects and understand simple instructions at the age of five for 6 months. Briefly, he has undergone a lot of external and internal bleeding. His school life has been on and off because of bleeding.
Access to treatment has been a challenge whenever he gets an injury. The nearest treatment center for care for Hemophilia was only at MTRH Eldoret which is 100 km from our residence. Doctors, clinicians, and nurses have played a big role to educate us about home care and self-infusion. His first prophylaxis was when he had a swelling knee. He could not walk nor stand, but the following day after prophylaxis my son walked although with the aid of support.
Factor as treatment product has been the main alternative to his bleeding both external and internal. By prophylaxis, his circumcision was successful at the age of 7 years. The year 2021 after developing inhibitors, he was introduced to Hemlibra treatment product that is more effective than factor. Hemlibra has really changed his life by reducing the multiple bleeds he used to have. This has enabled him to attend classes regularly and likewise reduced the cost of treatment and uncured expenses.
With the changing world and technology, we hope one day, gene therapy that is more effective will reach every hemophiliac. As a caregiver, we appeal to our government at the local and national levels to consider budgeting for treatment products for hemophilia patients.
My name is Mosongoh, a Kenyan man aged 43 yrs. I have hemophilia. I was diagnosed when I was 3 years old, and ever since then, it’s been a constant presence in my life. Hemophilia is a genetic disorder that affects the blood’s ability to clot properly, which means that even a small cut can be dangerous. In Africa, this condition puts a person affected with hemophilia in very dangerous situations, due to cultural beliefs. Growing up, I had to be really frustrated most of the time the community did not seem to understand why I had to bleed profusely with a small cut, and in school, it was not any better.
My mother made sure I didn’t do anything too risky while my father did what to have anything to do with me, she had to take me to the hospital every few weeks to be transfused with blood and this made to be known as a village blood drinker, I was not allowed to play with other kids in our neighborhood as I was referred as a breeder one by the parents of my friends in the village.
Despite all the precautions, I still had some close calls. My joints started to have internal bleeds. One time, when I was playing with my little sister, I accidentally fell down and started bleeding heavily on my forehead. My parents had to rush me to the hospital, where I got surgery and a transfusion of blood.
As I got older, I started to feel really frustrated with my condition. I couldn’t do the things my friends were doing, like playing sports, having girlfriends, or attending village parties. I also had to be really careful about what I ate and drank since certain foods and alcohol could interfere with my clotting.
But over time, things have improved since the World Federation of Hemophilia started to donate factors products. I have learned to adapt and cope with this condition and I have found other things I’m good at, like playing chess. I have started to realize that having hemophilia had given me a unique perspective on life. I know that every day is a gift, and I have learned to appreciate the little things.
Now, as an adult, with my dear wife Daphine my daughters, Laurie and little Anne I’m grateful for the life I have. I know that hemophilia will always be a part of me and my family, but I also know that it doesn’t define us. I’m more than my condition, and I’m proud of who I am.
For now, our government has not given any commitment to provide medication for persons with hemophilia. Hopelessly have no space in my heart. The future of hemophilia is bright.
I am Ben Maoga Mosongo,34 years old, a Kenyan who has moderate Hemophilia A. Professionally am an electronic mechanical. I was elected to serve as the executive board member of the Kenya Hemophilia Association (KHA) where I represented patients with needs.
To me, Hemophilia is life-threatening with all I have experienced. I have gone through a lot living with hemophilia, and sometimes am in denial. Today I have a pseudotumor that has really affected my capacity to execute many functions. Am not sleeping like other normal people due to the location, size, and pain from the pseudotumor. Most of the time I sit till morning and my life is full of distress, can’t walk or stand for a long time.
In old times, we were in darkness because accessing health facilities with the capacity to offer hemophilia treatment was a nightmare. We used to travel long distances for medication and by then the only treatment available was fresh frozen plasma and cryoprecipitate. Sometimes our parents paying attention to our health needs was inadequate due to other competing demands resulting in deformities. The most challenging thing is sometimes you feel rejected by friends, only a few stick around, and those who have gone through the same journey. My kids always ask me when will I walk like them. What really happened daddy? and many endless questions.
Nevertheless, I really thank God because there’s a relief that there is access to factors and other treatment products that we use to manage bleeds and relieve our pains. This has been possible through goodwill from well-wishers like the World Federation of Hemophilia (WFH) who donate factor products to Kenya. Currently am using crutches as the pseudotumor on my left side has really brought so much stress on my movements but with the continued prophylaxis with factor VIII, I hope it shrinks to an operable size.
God is so great because my family is always encouraging me. I also thank God for my physician and nurses for being there with me all through and helping me cope. Am hopeful I will get well soon. My wish is for the government of Kenya to recognize the needs of people living with Hemophilia and enhance access to treatment.
Today, allow me to go down memory lane and narrate about a condition that changed the trajectory of my life as a father- a caregiver.
I had been uninformed about Hemophilia until 2009 when I set foot at the doors of Kenyatta National Hospital where I got enlightened on Hemophilia. This was the day that not only proved most fruitful along the lines of seeking medication for a ‘disease’ (so we thought), that we didn’t have a clue about but also the day that I knew that my sons’ bleeding condition was neither a disease nor a curse but a manageable bleeding disorder.
Since 2004 when my third-born son (Now 20yr old) started showing symptoms such as swelling of joints and rampant nosebleeds life hasn’t been quite as usual. The case doubled in the year 2005 (Now 18yr old) when we were blessed with another child who was hemophilic. Frequent visits to and from the hospital started becoming a norm to the extent of absurdity let alone the constant fear of my two sons losing their lives to Hemophilia. (Both of them have Hemophilia A)
Because the two hemophilic kids had to constantly play regardless of their being vulnerable to bleeds, most of the time they came back home either bleeding or with swellings. This meant that their siblings, mother, and I, had to find ways to stop the bleeding or suppress the swelling which at times translated to less sleep or no sleep at all.
Back then, factor was something unheard of and the use of crude ways to stop the bleeds seemed to even worsen the symptoms. I remember even rubbing a hot wet towel around a swelling with the intention to reduce it. Little did we know that we were making it worse instead.
Compounding the reality that a lot more ground on Hemophilia in Kenya had not been uncovered, many cultural norms and practices added insult to the injury we already had. The never-ending prejudices from neighbors and the community that insisted on primitive courses of action pushed us as a family to the edge. Some even went to the lengths of terming us as a cursed family.
This notwithstanding, we trudged on as a family nursing our hemophilic sons and siblings. However, we had to live with the truth that whenever one of them got injured they had to pause their education and stay at home until the day they recovered. Such a case came in the year 2008 when Allan- the second hemophilia son had to stay at home attending to his swollen knee for a whole year without access to education or proper treatment.
Fast forward to the present times, tables have turned and life has become even more bearable, to say the least. Thanks to easy access to medicine, hospitals, and even a community of hemophilic families that can lend a shoulder to lean on. With organizations such as the Kenya Hemophilia Association and the World Federation of Hemophilia coming to our rescue, we rest assured that the provision of factor products will always be within our reach.
Today, it is safe to say that periodic hospital visits, hefty costs of transport, and missing school just because of a minor bleed are now something of the past. This is because home-based treatment is now common as the two hemophilic kids can administer their prophylaxis treatment even without the help of a doctor. This has cut a lot of costs such as maintenance and transport costs which certainly had an impact on our living standards as a family.
That we are headed for promising times in the near future is clear from the decibels of modern technological advancements, medical development, and a great deal of financial support alongside the availing of medical infrastructure concerning Hemophilia. Yet, despite these advancements, some underlying concerns can be taken into account for a better tomorrow.
A good start would be training other affected members of the family on how to handle their hemophilic siblings such as administering prophylaxis, how to handle bleeds and even ways of treating nosebleeds. These can be made through online training and education amongst other channels.
Along awareness lines, in my view, the hemophiliacs themselves besides their siblings can be a conduit for mass awareness of hemophilia and its effects. This is because they are the ones affected firsthand. Armed with the knowledge they have acquired over the years; they stand a chance to be upfront in the battle of ending deaths accruing from this bleeding disorder. Perhaps this is the surest way to bridge the gap between the already known and unknown hemophilic in the whole world. Who knows?
Furthermore, the provision of guidance and counseling to the affected family members will also go a long way in the reduction of depression caused by constant witnessing of the agony that hemophiliacs go through. To be frank, as a father, I have seen the effects of agony spread all over the family members whenever one of the hemophilic kids gets injured or gets hospitalized.
Moreover, with the utilization and availability of technological instruments such as laptops and smartphones, families can now be virtually assisted whenever an injury occurs without necessarily visiting the hospital.
In retrospect, comparing how life is now with long before we got enlightened, I consider it a blessing to have known the bleeding disorder at the opportune moment. Life now is snug and above all, knowing that my two hemophilic sons are going to readily access treatment gives me a sense of serenity. Many thanks go to all organizations and friends that stood by our family in combatting hemophilia and its effects. Surely, the synergy that has been in play has borne fruit in the long run!
My name is Dennis Rutto, I have severe hemophilia A. I was diagnosed with the condition in the year 2012 after I had undergone circumcision. Early diagnosis was missed due to a lack of knowledge among my parents and the community at large. Having the kind of health issues I had was considered a curse, which resulted in a lot of stigmatization, disability in major joints due to lack of proper treatment, and seclusion. Since my diagnosis, I have been receiving factor infusions only on demand as we do not have enough factor supply for prophylaxis as a country, and through this, I have seen a drastic change in my bleeding episodes, reduced pain and suffering, and a dramatic drop in the number of times I have needed hospitalizations. Overall, my quality of life changed for the better allowing me to be an independent young man with a Diploma in Health Records and Information Technology working with the Ministry of Health. My prayers and wishes are that the government and other partners work together to provide access to essential hemophilia treatment products in the country to support both on-demand and prophylaxis in line with enhancing universal coverage and treatment for all.
“Being a hemophilic is just a matter of adopting a diverse lifestyle that is more protective and safe”
Growing up in a developing country with Hemophilia meant more than discomfort, pain, and disability to me. I remember the times spent lonely at home, away from friends. At times, friends were reluctant to include me in games due to the fear of the disease that I would end up with an injury or a severe bleed. During childhood, my playtime was well guarded, excluding me from all school/extracurricular activities. I felt deprived of my entire childhood and it gave me an inferiority complex. Growing up as a teenager was not easy either.
The social stigma that surrounds Hemophilia has adverse effects not only on the patients but also on their relationships with family, friends, and colleagues. As the disease progresses, It can cause a condition of caregiver burnout for the family members, and they may also be affected by the stigma often attached to the disease. I was diagnosed at the age of 14 months with hemophilia “A” [severe factor VIII deficiency]. In the early 1980s, there was nothing much to treat my condition except FFPs [fresh frozen plasma] in Pakistan. Because of knee damage, I needed a leg brace by the age of ten and depended on crutches and a wheelchair at different times. I give my parents great credit for teaching me that life is manageable and I was never allowed to feel sorry for myself. I’m so blessed to have a caring wife and a lovely daughter.
Later at the age of 12, I was tested and got positive reports of co-infections. My physician and my father decided not to disclose the results of the test. I was quite young to digest the details. At the age of 22, upon knowing my status of co-infection, the whole world collapsed around me. Hopes were shattered and life seemed to have come to standstill. My friends started avoiding me and my workmates preferred not to interact frequently. I visualized several things to suppress the reality until finally I surrendered myself to Allah. First question that came to my mind was “WHY ME?” Then I looked for answers; “Allah only burdens those capable of bearing the burden”. I have gone through many trials and surely there is a reason…Allah tested me. Then I read a verse from the Holy Quran; trials given to people are commensurate to the courage they have. Rather than being sad, I felt proud. Living with a chronic disease along with Hemophilia teaches you how to persevere and cope with adversity.
Having transcended my fears, with the belief that the future lies in Allah’s hands, I live each day positively and with the courage to face the uncertainties and complications sourced by Hemophilia and my co-infection. I have seen life as not as simple as others have; the challenges I faced have given me the resolve to not only help myself but also others. In my teenage; I decided to volunteer for the hemophilia cause by joining the local Hemophilia Society in 1998. I’m currently serving Hemophilia Foundation-Pakistan [HFP], as a “Community Advisor”. In my previous role, I served for eight years as President of PHPWS and represented Pakistan on many national, regional, and international platforms. As a patient activist; I have been advocating to achieve treatment for all those living with bleeding disorders. I strongly believe in the greater involvement of Hemophiliacs at all decision-making levels. After doing my Master’s degree in Business Administration [MBA]; I got an opportunity to work for United Nations. I believe education and determination to face the reality can lead hemophiliacs to a healthier and more successful life.