Born in an emerging country with severe hemophilia, factor VIII deficiency, and at a young age diagnosed with co-infection was like a nightmare. Upon knowing my disease related complications, the whole world collapsed around me. Hopes were shattered and life seemed to have come to standstill. I have smelled the changing behaviors in my relationships. Friends & colleagues started giving excuses for not socializing frequently. With age and disease related complications, family members may also become burdened by caregiving, and they may be affected by the stigma & discrimination often attached to the disease.
I have developed psychosocial issues and started visualized various ideas to suppress reality until finally I surrendered to God. First question that came to my mind was “WHY ME?” Then I thought for answers; “God only burdens those capable of bearing the burden”. I have gone through several trials and surely there was a reason…God examined me. Then I read; trials given to people are commensurate to the courage they have. Rather than be sad, I felt hopeful.
Putting my fears aside, with the belief that the future lies in God’s hands, I live each day positively, with courage to face the uncertainty of being hemophilic who has co-infection. I have seen life not as simply as others have; sufferings I faced have given me the strength to not only help myself but also others. “After psychological stability and coping with sense of inferiority complex, I have seen a positive change in my relationships towards others”.
My strong faith on God has helped me reconcile with my feelings of aggression and coping with psychosocial issues developed in my personality due to my disease related suffering. Social support reduces stress, improves treatment adherence and quality of life. Faith and emotional support may also help person to restore his reason for being and increased self-esteem.
Hello & Good day to all of my listener ,
My name is Zeaul Haq Parvez …I’m sever HEMOPHILIA A patient…I’m an active member of HSB (Hemophilia Society Bangladesh) Currently in studying in Hon’s 1st year & I’m 19 years old…..Today I trying to write about the most event full story of my life related to hemophilia….
Well my hemophilia disease was caught when I was 11 years old….Though I knew about it i didn’t think much about it….In my early age I used to live in village so walking running & jumping was basically my schedule …. But after that disease there was a lot of restriction but I still mange to get out by loop hole….Then at the age of 8 I came to city same as village less book more kick then one day i had a huge knee pain but after having few antibiotic my knee fell little better then same as usual as sport again pain life that 2 years coast but in my knees it started to accumulate blood but it didn’t sallow when the pain was gone and by time the bleeding started to became more frequent…One day after returning from my school I look at my knees I remember doctor said that there was blood in my knees so I thought that if i flow out all of the blood I will be all good…So i took a blade & unimaginable i cut my left knee there was blood flowing out of my knees I got scared so urgently call mu parents …they came rushing & took me to doctor fortunately I was a cowered that’s way i cut only a little bit…. but because of that I had a huge bleeding that was so painful that at midnight I munched an covered right next to my bad so hard that it woke both my parents & they came running to see me & at that time all my pain turn into frustration & anger I started to curse then because of them I had that disease & I had to suffer so much that …Upon hearing that tear started to flow from my moms eyes & she said nothing & went to hear room but I can hear her sound of crying from next door…My father was standing beside me he sat next to me…..He gently put his hand on my knees & said that “Son from next time please don’t hit your self coz it also pains us as much as it to you”….After that he went to his room & was trying to calm my mom….Next morning I had bleeding in my hand along with my left knee….But that morning I straightly went to my parents & said to them…what I said to them was unforgivable but still I want then to gave another chance to be a better son ….After that I had a lots of bleeding but never told them about them but some how they always find about it….After that I was meet with HSB that change my life for good…..
So much time passed but i still don’t know was my that foolish action was for better or for worse …….
I don’t have much complain about Hemophilia but I wholeheartedly have one that it took one thing away from me that I always look that’s…………SPORTS……..
Thanks All of You for listening to my story……
Agradece por ser especial!
Me llamo Ángel Quintero, fui diagnosticado con Hemofilia A severa a los 6 meses de nacido, ya tenia antecedentes familiares.
Por mi condición y la ausencia de tratamiento en mi País, tuve una infancia bastante difícil con muchos episodios hemorragicos, mas sin embargo, el apoyo de mi familia y mis amigos los cuales se encargaron de cuidarme, apoyarme y nunca tratarme diferente, hizo que ahora tenga muy buenos recuerdos de cada etapa.
Aun, hoy día a mis 35 años de edad, con daños irreversibles en mis articulaciones debido a la escasez de tratamiento, agradezco haber tenido y tener personas maravillosas en mi vida que hacen que a pesar de las dificultades halla podido lograr cada una de mis metas para llegar a ser un profesional y aunado a eso, hoy tengo una esposa comprometida con la Hemofilia que forma parte de la Asociación Venezolana para la Hemofilia (AVH)
y trabaja para mejorar la calidad de vida de todas las personas con la condición, ademas gracias a dicha asociación y al apoyo de la FMH actualmente recibimos tratamiento.
Por eso aconsejo a las personas con Hemofilia y cualquier otra coagulopatia a que siempre informen y eduquen a todas las personas que los rodean por que pueden mejorar su calidad de vida física y emocionalmente e incluso pueden llegar a salvarla.
cc salut je m’appelle Fabrice IKOU BIYOUKOU, je suis infirmier au Centre Hospitalier de Libreville (CHUL) je m’investis dans l’hémophilie et sur les personnes atteintes de cette pathologie depuis déjà deux ans (2 ans) auprès du Docteur Léonie Esther LEDAGA médecin hématologue, grâce à qui je me suis lancé et prends en charge quotidiennement ces malades dans le but de les aider à améliorer leur qualité de vie.
j’exhorte donc mes frères et sœurs gabonais à faire comme moi personnel de santé ou non, à soutenir les hémophiles pour apprendre à mieux connaitre cette maladie méconnue du grand public.
My name is Nabila Husseni and I am a para hemophilic i.e., Factor V deficiency. In times of exciting new developments in the care of people with bleeding disorders, especially in the treatment of hemophilia, Gender Equality and Outreaching has now been incorporated in the developing countries in the bleeding disorder organizations, which is applaudable.
It is highly appreciable to see that voices of women with bleeding disorders are heard and given equal opportunities where men within the existing hemophilia community are now working together with women as a way of empowering them.Organizations within the bleeding disorder community are making important strides in addressing women and bleeding disorders.
As a female with ultra-rare deficiency factor-5, I had to face many hiccups in my life and I have witnessed how my parents faced difficulties as I was growing up with no access to proper treatment, which is still prevailing. When I was 8 months old, I fell down from the bed which resulted in a cut on my lower lip, causing profuse bleeding. At that time, doctors were not yet aware of Hemophilia and its treatment. When my bleeding did not stop, I was brought to the KEM Hospital in Mumbai and was diagnosed as a female with factor 5.
My childhood was never normal. I was not allowed to play outdoors with my friends. When I was four and a half years old, I fell down the stairs and had a brain bleed. I was on the verge of death. Doctors in my city refused to handle my case and again, I was taken to the KEM Hospital in Mumbai. The brain bleed affected me, I started to have seizures and I stammered while talking. I was then referred to a neurologist and for six years, placed under medication.
Over the years, I suffered different types of bleeds ranging from excessive and painful menses caused by an ovarian cyst (again near to the verge of death) to getting fractured in both of my knees and having spontaneous bleeds in the knees. Being a female “bleeder”, I face issues that male hemophiliacs do not face physically and in personal life too. Yet, these challenges have not stopped me from living my life to the fullest.
I was the girl who was not allowed to travel alone. But in the past few years, I had traveled to the Philippines (my first solo trip) where I got exposed to another country’s hemophilia work than to the USA and the UK for attending WFH congresses.Girls also need to be tested for bleeding and we now know there are also many people with rare bleeding disorders in India.
I graduated with a Bachelor’s degree in Commerce and another Bachelor’s degree in Education for Teaching. I also received diploma certificates in computer applications. I have worked as a teacher for five years in a renowned school in my city. Currently I work with an IT firm as a technical content writer.
My vision is clear — to find women with bleeding disorders and to help them deal with various aspects of their life. This way, they will be able to overcome whatever challenges that they may encounter. I have witnessed how my parents faced difficulties as I was growing up with no access to proper treatment.
In my spare time, I volunteer as a communications specialist and women’s group coordinator for the Hemophilia Federation (India). I was also named as one of the ambassadors of MyGirlsBlood,which was an international network of women with bleeding disorders run by Mrs. Cheryl D’ambrosio from USA till 2016. My hope for the future is to be an example to other women bleeders to strive and also to become the voice for the ultra rare deficiencies like factor 5,2,13 and a few others. We are rare but we do exist. Please please give a little focus on us too.
CC salut je m’appelle Fabrice IKOU BIYOUKOU je suis infirmier au Centre Hospitalier Universitaire de Libreville (CHUL). je m’investis dans l’hémophilie et sur les personnes atteintes de cette pathologie depuis déjà deux ans ( 2 ans ) auprès du Docteur Léonie Esther LEDAGA Médecin hématologue grâce à qui je me suis lancé et prends en charge quotidiennement ces malades dans le but de les aider à améliorer leur qualité de vie.
j’exhorte donc mes frères et sœurs gabonais à faire comme moi, soutenir les hémophiles par le canal de l’association gabonaise d’hémophilie (AGH) pour mieux connaitre cette maladie
Greetings to everyone. Hope that the person who is reading my story is healthy and safe.
Myself Suvo Rahman from Jessore,Bangladesh. I am going to share a story which is occured few days ago. One day, in noon I suddenly started to feel stomach ache. My family thought it was just a normal pain. But with the passage of time the pain started to increase so extremely that i never experienced. Moreover I started to feel fever along with the vomiting. On the next day, i rushed to the hospital.By observing my condition, Doctor told us that it was a kidney infection. I tried to make them understand that i am a hemophilia patient and it is somehow related to any sort of bleeding in my stomach. But Doctor didn’t pay heed to me. They infused sleeping injection in me. They were giving me treatment on the basis of kidney infection but situation didn’t improve. That time the pain was so extreme that words will fail to explain it. i started to feel that i am going towards the end. But later on, observing my worst situation, doctor considered my word and gave me one bag fresh blood. In next three days they gave me three bag plasma on daily basis. Then I started to recover from that condition.
Thank you for patiently reading my story.
Myself Md. Abu Naeem & my age is 17. I am a student of class xii in a basic science group. I am from Bangladesh.
I am going to share my story according to my hemophilia situation. I have already known about my bleeding disorder because of my elder brother was suffering a lot from a bleeding disorder. As usually I was diagnosed when I was four years old. I am a moderate Hemophilia ‘A’ patient. At that time I was suffering for my gum bleeding but I had taken a few bags of fresh frozen plasma. In general, I felt disappointed with my own condition. Because I couldn’t play an outdoor game & I faced many social stigma due to my disorder.
One day confidentially I had gone to play cricket but unfortunately, I was hit my own right knee by my bat. On this spot, I was shocked for a few minutes. After that, I had gone through totally ambulatory conditions. I live in a village that’s why I didn’t manage plasma or factor concentration at the right time. So my right knee swelled up as much as possible. My family managed a few bags of plasma from Jashore in Bangladesh, but that was too late. I was suffering for my knee joint four years I couldn’t walk in a single step at that time. My family specially my dad was very supportive. During that period I continued my study from my home and my dad was bearing myself all of my exam period. Now I am fine for my good understanding related to a bleeding disorder. I am involved in youth activities in our country. Always I believe that if I grow my confidence level one day I will overcome all the difficulties.
Our Hemophilia Society of Bangladesh helps us all the critical situations while we faced any problem. Thank you Hemophilia Society of Bangladesh and World Federation of Hemophilia.
Life of a boy suffering from hemophilia.
I’m Feroz,haemophilia sufferer but my life never stops. Let me present to you the little idea of my life.
Born in 15-03-1997. The current age is 24 years. At the age of nine months, at the time of hammering, he began to become slightly black in various places of the body, including knee, cunnies. Bleeding out of blood After taking three bags of blood, my blood stopped stopping. The doctor said that I have hemophilia.
Doctors also said that the cause of the disease is hereditary and the symptoms are where the blood will not stop when cut. Where there is an injury, the swelling will bleed inside the body so you have to be very careful. But they dif not say that there is any treatment for injection, plasma or therapy. Then many days, months, years go, we went to different types of doctors, there is no profit but loss.
At the age of 7, the left knee suffered a lot of injuries, then my left knee began to swell again and again at one point i have to use stick to continue my walk away. Stick around for about 6/7 years but at 2014 I will be in ninth grade one day my mother’s cousin will be my uncle. He will show me the homeopathic doctor. He used to see me for a long time and said that it was really good if i came before but it is still not too late. Without saying another thing, after I got hit by Ben, I could not walk better, but after his treatment he told me to take a stick with my armpits and then I started to walk slowly, knowing that before a year I learned to ride a bike. I didn’t even dream.I bought a bikeint 2015 and went to college every day for 5 km, and thus, when I started taking the HSC exam in my body was very impure from the second test day.
The homeopathic doctor’s medicine no longer working,but that way I passed the HSC exam and then I was admitted to Hons.
You know, when I went to infuse blood due to blood loss in the body, Doctor told me to go to Dhaka PG hospital. He also said that there were some injections that cost Tk 6/7 thousand they could have paid 4-5 or more but then my family did not have the ability to afford Tk 40-50 thousand taka.
What would you think if I heard one thing, I still knew in factor injection, plasma, therapy in 2017, but I didn’t try so well I was good at treating that homeopathy doctor. However, when his medication did not work after the HSC examination, I went to a doctor on December 24,2017 he told me the first thing and then I knew everything from the internet in just two days.
In 2018,I went to Dhaka, I was admitted to the hemophilia society, where I took a factor for the first time. Then i took some therapy and i got very good feedback, then after 10days i came back Dinajpur.
Society has played a big role in my recovery and they helped me many times with factor injections, even if they have a factor.
After coming from the Society, I followed them and since then I have been very good at the mercy of Allah.
Now i am Hons 3rd year student, I am also doing a job around for more than 3 years.
You know, my village now speaks a lot about me. How I was and how I am now. No one sees me and believes that I have such a big deficit.
There was a lot of thing to say but already its more.
You will never lose the confidence I have in asking for every hemophilia patient. Because your first motivator is you.In the world who have been more successful than you with their deficit and you should learn from this. There are many people with your disease and those who do not have hands, but they are leading a life. Did you know that a hemophilia patient won a silver medal in the Olympic bicycle race?
Pédiatre exerçant depuis 20 ans, j’ai été confrontée à l’hémophilie pour la première fois il y a environ 6 ans.
En 2015, j’ai reçu un papa accompagnant ses deux garçons de 3 et 11 ans hémophiles A .Le plus grand avait été circoncis à l’âge d’un an, ce qui avait révélé la maladie devant le saignement important qui avait suivi l’acte. Le papa désirait réaliser la circoncision de son deuxième garçon et éviter le scénario vécu par le frère ainé.
A l’époque, je ne savais pas vraiment à qui l’adresser, alors je lui demandé de me laisser le temps de passer quelques coups de fils pour organiser cette intervention. Je me suis vite rendue compte qu’en absence de facteurs, une circoncision n’était pas possible . Je suis restée en contact avec la familles pour gérer les épisodes de saignement que l’on arrivait souvent à stabiliser par administration de dicynone et parfois plasma frais congelé…
En 2017, le soulagement est venu par une hématologue du pays ( devenue médecin référent) en collaboration avec la fédération mondiale de l’hémophilie ce qui a permis d’améliorer la prise en charge des patients hémophiles grâce à la disponibilisation des facteurs au moins pour gérer les accidents aigus.
Depuis lors mon petit patient a été circoncis après administration de facteur . Suites simples.
Habib Al Fahim 18 years old. I live in Gazipur Bangladesh. I am hemophilia B’ severe patient.
Like every normal human being, I do not have dawn.
Almost haemophilia causes bleeding and severe sleep apnea.Most of the time I try not to tell anyone.Because my pain spreads to everyone in the family.Dad goes for plasma, mom goes for factor.The younger brother repeatedly gets busy bringing an ich bag.Father’s office is working, brother’s school is closed.The pain becomes worse as they think.Most of the time, parents do not have to get factor plasma.We cannot stand upright if there is bleeding in the knee or waist.In this case, we know how difficult it is to get plasma from a medical vehicle.I have been suffering since birth.Then all the healthy people are moving in line.I am unable to complete.If I received timely treatment, I would lead a normal life.
السلام عليكم ورحمة الله وبركاته
أسعد الله أوقاتكم بكل خير
انا والد الأطفال غازي و ساري من مواليد السعودية وهم هيموفيليا B
ويعتبر المرض وراثي عن طريق الأم
ونعاني بشدة من توفر العلاج بالسعودية لأننا غير سعودين
واطمح بتوفر العلاج عن طريق الصليب الأحمر حول العالم بوظع حقيبة بها أفكار تساعد مريض الهيموفيليا ومن ضمن الحقيبة ساعة مثل ساعة آبل وبها أفكار ومعلومات عن حامل الساعة بتكنولوجيامتطورة ولدي أفكار أتمنى أن تتحقق ولو أستطيع الهجرة إلى الدول الأجنبية لفعلت لاني فلسطيني