•I am not a woman with a bleeding problem, but I met a boy five years ago who suffering from severe type of hemophilia.
My nam is Eli, I am from Iran .I am architecte and that boy was cinema director.
That boy also has a different job ! He was a good manager of hemophilia society of Iran in our city.
We met each other five years ago in language institute, I heard about his job and I was wondering what are they doing there. After a few months finally I found myself in his office (hemophilia society). It was great because they helped to the hemophilian people to get their medicine! Finding a good job for them and also teaching them and their family to make them understand about their body,the sign of bleeding,and everything that they needed to know as a physically or mentally.After while I started to helping them too,but just like extra helper not like them actually.I liked him because he was wonderful person,he cares about the patients and it was beautiful for me. One day I get that I in love with him and I get that he does love me too. After a year our love was much more than before.
We loved each other but something was wrong between us! He had kind of obstacle for me! I didn’t get that and I was unhappy and thought he is not like before or he won’t continue more than this! Util one day when we were alone he told me sit down , I have to tell you something that I never said to even my bests friend, It’s my secret, I don’t want to people see me as a different boy.I was stressful and he told me ” I am a hemophilia person too , Type A”!!! And continued ,I understand it should be hard for you, I love you but this is my big problem,he stopped talking and just looked at me.
Wow! I was wondering, he became to my hero, he was too strong, who tell that hemophilian children can not help to the other people or have no good job,have not good education or can’t be a bodybuilder!! I was silent and thinking about this! And asked him whay you didn’t tell me before?! He said I really love you and I afraid of telling this to you because I understand it should be hard for you, I can understand your feelings now and also told me this is my weakness, I won’t tell this to the other people cause their look will changed! He was sad and he thought I wanted left him, and he told me if you want to left me it’s correct time. I said no, you can’t understand my feelings, whay am I should left my love?!! I just hugged him as hard as I could . I told him it doesn’t matter for me, I love the way you burn,I love you even more than before. I want to be with you forever. And I get that whay he had a obstacle for me!! when I Came back to my home I thought how much he can loved me and trusted me to share his secrets to me! And I was really feeling happiness. We fall in love together and after a while we decided to get married together. When We went to honeymoon , when we were ready for sleeping at first night he said I would like to tell you a story and I was too happy like a child and he started: when I was a child Iran decided to production hemophilia factors from human blood , but they weren’t carful to choose a right and clean ones . It wasn’t enough foreigner medicine at that time too, so we had to use of them. But after few months we thought that medicines was viruses, and because of that some of the children attacked to HIV,some of them Hepatitis C ! And I attacked to hepatit C ! . My heart just stopped biting . And he continued sorry I was afraid to tell you about this because I am afraid of losing you! Don’t worry,I really take care of you and I will be very careful like before. At that moment I didn’t know about the HCV but i was really sorry for all of them and felt shame for our government and also those doctors! I started to breathing and crying,asked him “are you ok now?what shuld we do? I don’t wanna you die?!” And he laughed at me and said we should be hopeful for coming the new medicine. And I was just loving him like before and nothing changed for me. Every thing goes well until I understand my husband didn’t have special health insurance that the hemophilian used it,and when I asked why he told me,because I said to reporters for many times in medical magazine the government should give us enough medicine (factor)! But after last report of mine they just cut my insurance,and I have to use from my brother and some of my friends medicine! That’s broken my heart!
And finally he found it they don’t care about them so they decided to organize their medicine, cause the medicine wasn’t really enough for all of them.And I found it beautiful,
They helped each other to be alive. Until one day we heard one of this child died because of lake of medicine in hospital!!! We were really sorry,and the other day we heard again about one of them,and one of them! That time my husband was really angry and he started to have a new interview with the government newspapers! And he just said that the insurance government doesn’t give us our medicine, they are thieve from our medicine budget! It’s enough! After a few days my husband was disappeared for three days!
One day after that his interview,they arrested him in his office without any explanation and after few days they finally left him. Yes,they tortured him and of course they oust him from his job.
Now we are here in (Turkey) ,so we had to find a way for getting medicine for my husband how was at that days ill and even he walked hardly. Because of lack of factors,he had inside bleeding (cause of hitting him )We didn’t know their language and no one knows English! We went to all of hospital in our city here and they couldn’t help us! After four months they decided to talk about our problems and one of them told us “you should wait,we have to decide,we will call you if it was ok!” For me it was like go and watch your husband diying!!
After a month they call us and said ok,you can come and take your medicine! Wow ,I was really happy and started to cry because of my husband life. Yes,they finally gave us that medicine but it wasn’t easy for us,we didn’t know no one,no language, no home,no nothing. I just try saying my story in short way here!
After all we had to finding job for our lives. Finally by the men who wants to help us ,we don’t know why! But we started to working at a cafe. It was hard for us,we worked as a waitress and me as a cleaner in the kitchen.
It was hard but we decided to do anything for our life. But after few months my husband felt so pain in his liver, that job was redline for hemophilia person but he didn’t care about himself. We afraid if that pain is cause of Cirrhosis of the his liver . One year before he had a test and his results was near two million and now his enzyme was about ten million from two million! Because of the smoke was in the cafe, our meal and also our time sleeping! All of them was awfull. We worked 4 pm util 4 am. They gave us one time food but it wasn’t healthy ! They gave to the personel all of the material was in the kitchen but they were rotten food !! We didn’t die but were sick all the time,and we couldn’t sleep enough for the other day! One day we understood by our dear friend Kathleen in USA , there is a medicine for hepatit C ,and she gave us some information about that medicine “HARVONI “. I was really happy when heard about and when we asked here , they told us we waiting for that medicine too! So we had to wait too again.His pain became day by day worse, we could just praying. One day after 3 months we found out it’s came.
So our job was just started. We asked from doctors how can we get this medicine ?And no one could help us again!But we didn’t stop and we went anywhere that we could and knew! Turkey insurance government told us ,that you can not get this medicine because you are not a citizen here,yes we are as refugees here cause we didn’t have any choice! No one cares about our life here too! But every time we heard a unpleasant news from them but we didn’t stop,we just counted !After hard and intolerable sixth months finally we get that hard medicine,and now my dear and lovely husband using of them. One month later it will be finished and after three months we have to take a new test,if it was clean and negative results so that means it worked.we did it together.I am still learning from this women and men who has a bleeding problem,they are all strong in all around the world. One of them who helped me to save my positives energy and never give up, and specially teaching me every day and proved me that it doesn’t matter where are you from,which color skin,what religion do you have,just one thing it’s matter “you are a human” , and it doesn’t matter how could be hard to help someone from the other world to another world ,we can always do! I love you all.
With respect Eli
Hola, mi nena fue diagnosticada con von Willebrand tipo tres y recientemente con hemofilia, ella ya escribio su historia y solo comparto su fotografia, en la cual fue reina de la primavera de su escuela.
HOLA LA HISTORIA ES DE MI BEBE SAMUEL UN NIÑO CON TANTA ALEGRIA QUE ES LA FUERZA QUE ME DA PARA SEGUIR ADELANTE Y NO DERRUMBARME CUANDO LO VEO SUFRIR, LA VIDA NO ES FACIL PERO NOS PONE A ESTOS ANGELITOS QUE EL SOLO VER SUS CANAS DE VIVIR NOS DA ESA FUERZA QUE CONFIANDO SOLO JEHOVA PUEDE DAR. EL TIENE TRES AÑOS LA HEMOFILIA ES SEVERA Y YA VA PARA DOS AÑOS CON INHIBIDORES DE ALTA RESPUESTA, PERO ADELANTE CONFIANDO EN JEHOVA QUE SALGA PRONTO DE ESE CUADRO Y PUEDA RECIBIR SU TRATAMIENTO. A LOS PADRES FUERZA Y ESPERANZA
Soy Patricia Benimelis, vivo en Valparaíso Chile y la palabra Hemofilia resuena en mi vida desde que recuerdo…mi padre era hemofilico A severo y vivió gran parte de su vida hospitalizado…recuerdo como si fuera hoy las ciento de veces que lo visite al hospital a lo largo de mi vida…cuando era pequeña no entendía porque sangraba tanto, porque por estar sentado muchas horas le provocaban hematomas o simplemente estar con sus manos cruzadas provocaban enrojecimiento, porque sus dientes se caían y la vez que intento hacer algo estuvo a punto de la muerte y además meses hospitalizado…cuando logre entender me di cuenta de lo vulnerable que era mi padre y ahí logre explicarme muchas cosas de mi vida…el porque no conducía (serios problemas de articulaciones) porque no podía viajar horas prolongadas (hematomas gigantes en sus muslos) porque no jugaba a la pelota con mi hermano o porque no podía pelar una simple papa…debo reconocer que muchas veces sentí pena por su condición…paso el tiempo y mi padre falleció a los 60 años con 7 tumores cerebrales…luego que mi padre muere la palabra hemofilia fue erradicada de mi casa y de mi vida…pero el universo me tenía una gran sorpresa…a los 7 años después de la muerte de mi padre nace mi segundo hijo, un hombre, hoy en día con 2 años y 6 meses y diagnosticado hace un año con hemofilia A leve…la palabra volvía a mi casa, a mi vida y a mi nueva familia…esta vez la palabra resonó mas fuerte, esta vez era mi hijo que dependía completamente de mi para su cuidado…esta vez los roles eran distintos…durante los cortos años de mi pequeño hemos pasado por varios momentos tensos y de angustia, pero por sobre todo hasta el momento hemos aprendido muchísimo de la hemofilia, hemos aprendido a reconocerla, a conversarla y hacerla parte de nosotros, de una manera más amigable…estará en nuestras vidas para siempre por lo que decidimos no negarla, sino que aceptarla…dentro de todo este aprender producto de la hemofilia de mi hijo, conocí a una hematologa que por primera vez pregunta por mi…me realiza una encuesta y el mismo examen que a mi bebe, a sorpresa mía y de todos, también tengo una disminución de factor VIII en la sangre mi y es ahí donde ella me explica mi condición de portadora de la enfermedad y el porque de mis hematomas gigantes y prolongados, de mis periodos menstruales que son del terror, del porque he estado hospitalizada tantas veces por hemorragias constantes…en 43 años es primera vez que alguien le preocupa mi estado y eso me hace sentir tremendamente vulnerable al recordar mi vida…solo espero así como se ha avanzado con el tratamiento de la hemofilia, se logre avanzar con las mujeres que somos portadoras…tengo la confianza que así será…
My name is Evelyn Grimberg from the Netherlands and I’m 30 years old. I have the rare bleeding disorder Glanzmann’s Thrombastenia. I have been diagnosed with 4 months. Just as many people with a bleeding disorder I have to deal with nose bleeds, bleeds of the gum, heavily bruising and problems with having my period.
Especially during my puberty I have had a lot of problems with heavily bleeding during my period with blood transfusions as result. Also the hormones were very heavy for my body and didn’t work enough to get it stable. Since the age of 16 I’m in the menopause by medication and have no period anymore.
Since the age of 17 I’m an volunteer at the Dutch Hemophilia Society. My visit to the WFH congress in Istanbul 2008 makes me realize that there is a lot to do to get more knowledge about rare bleeding disorders and women with bleeding disorders. Men and women are different in bleeding symptoms and social emotional. But also the environment deals different. When a men has a bruise he was in a fight what makes him cool. A women with bruises get abused.
I’m happy to see there is more and more attention. And thank you WFH for the theme ‘hear their’voices. We need to know so much more about the problems women has to deal with.
my twin sons suffer from Haemophilia which is something that changed all our life
I live in Syria, Aleppo. The war is affecting us in a very bad way – no medicine, no money, no hospitals available and so many other things- my sons are 14 years old. 9 years of them passed with the same grieve that all other patients have but the other 5 years were really disastrous. I lost my husband and our house in the war two years ago and from that time I started working and running from workplace to another just to collect that amount of money which I can pay to get the medicine which can hardly be available here in Aleppo.
My kids are the only thing that I still have in my life. I was and I am still striving just to help them get well. I have tried a lot to leave Syria to another European country where I can help my children get a better life but it is impossible to do so in the current situation because they can never take that long and terrible journey which so many others have taken before.
My name is Moline and I live with my family in Nairobi, Kenya. I am an Ambassador for MyGirlsBlood.
Nairobi is a very beautiful city with tall buildings including Kenya’s Presidential and Parliament offices. Tourists like the city of Mombasa better, because it is by the Indian Ocean; the port city of Kisumu is on the banks of Lake Victoria and the views are very beautiful.
Nairobi city has more people than any other city in Kenya. Many people work in Nairobi. The people, who earn more money, live in lovely areas and comfortable homes. Those people who earn very little money live in slums. The seven members of my family, including my mum, my dad my four brothers, my little sister and me, live in a single room. The room is not that large, but we manage. It has our beds, a few seats and a place where we can cook and eat our food. The food I like most is chapatti, made using wheat flour with chicken. The bathroom and toilet is outside and we share it with other neighbors.
I was born in 1984, but I did not find out that I had von Willebrand disease until I was16 years of age. Of course I had had serious bleeding episodes before that, and even one at my secondary school when I nearly died. I wasn’t always taken to the hospital, when I had bleeding.
I had a relative who said I was bewitched and tried to treat me with herbal medicine. It didn’t work. Not all of my family members believed that I was bewitched. Everybody had an opinion. Some thought I played too much.
When I was 5, I had a nosebleed that took 6 hours to stop. Everybody in our family was worried. They used cold water to reduce the bleeding but after a few minutes it would start again. My mum took me to a clinic where they told her that nosebleeds were normal for some children and that when I grew older it would stop. They told my mother to put cotton wool swab with liquid paraffin in my nose and use clothes for a cold-water compress on my head and neck.
At school, children would avoid including me in their games because they feared I could start bleeding. Teachers would remind me to avoid anything that could cause bleeding because whenever I bled, I would have to stay home for two days or more until I was better.
My secondary school was a boarding school and the teachers were always asking what my illness was and how it was treated. When I had a bleed I was taken to the nearest hospital and sometimes home, so I was in and out of school until I finished.
My condition was finally diagnosed when my younger brother, Javan, also started experiencing bleeding problems. When he was in the hospital he was diagnosed and we learned then that my father and I had von Willebrand disease too. My mother was really wondering how we would cope with paying hospital bills every month.
Once when my brother was in the national hospital, my mum met a woman named Maureen whose son had haemophilia. Her son had died because of lack of quick attendance by the doctors in the hospital. Maureen talked to my mum and said she wanted to help. Maureen started an organization to help those living with haemophilia and their families. The organization is called Jose Memorial Haemophilia Society of Kenya (JMHSK). My family was invited to attend the first meeting.
The day JMHSK was launched was the first time I knew I was not the only lady suffering from a bleeding disorder. I met over 20 girls and women that day. I made friends with three, two who were sisters; we shared our stories and agreed to follow up with each other about our problems. Sharing our stories encouraged us and we thank God that we have learned about our problem and know how we can handle it.
At the meeting of the JMHSK, I also met Laurie Kelley who founded LA Kelley Communications in 1990 and Save One Life. Laurie helped members of JMHSK to get clotting factor and gave us assistance so we can attend our haemophilia clinics.
Since that first meeting of JMHSK, I have met 16 girls and women with haemophilia through the MyGirlsBlood campaign that lasted from the month of January to March in Kenya. I have met some women who have no knowledge of their bleeding problem, some believe it can be solved with herbal medicine or spiritual intervention; others are ignorant that they have a problem. Some women I have helped have agreed to seek medical attention for the first time.
I believe it is vital to be involved. I volunteer in any activity that will help women to know about haemophilia, like trainings, counseling sessions, having campaigns and seminars in Kenya. In my country many are suffering because they do not have the knowledge they need. Most of all, I wish that haemophilia clinics could be opened in Kenya so that all the services people with bleeding disorders could be together and these services could be made available to people who do not have the funds because they are poor.
I would like to teach others and help them to learn about haemophilia and how to manage it. Acceptance comes first. It helps people to cope and be open to learning. It leads to a better life. My dream is to prevent people from dying because they are ignorant or do not have the money to afford the medical care they need.
This is why I am an Ambassador for MyGirlsBlood.Infact it was a great opportunity since MyGirlsBlood helped me attend the 2016 world hemophilia congress which i gained more knowledge on how to deal with my condition and hemophilia at large.
Currently creating women bleed too awareness in Kenya.
I am a woman with a rare bleeding disorder (severe factor 1 deficiency). Blessed to be diagnosed at birth, but faced with limited treatment options for most of my life. Until 2014, all I had was cryoprecipitate. In 1998, as a result of the contaminated blood crisis that affected individuals with hemophilia world wide, I was diagnosed with hepatitis C. In spite of those obstacles, I have had relatively few issues. In 1998, I also started prophylaxis, which has served me well through the life stages of college and building a career. Over the last few years, things have improved greatly. Started factor concentrate (fibrinogen concentrate became available in 2009, but I could not get it right away). Started home infusion in September of last year. On January 24, 2017, I was declared cured of hepatitis C after having done treatment with a new drug last year. Standing with all those around the world in hopes of better treatment for all.
I wasn’t diagnosed with Hemophilia until I was 46 years old despite having a son and several family members diagnosed. I grew up thinking heavy menstrual bleeding was normal, suffering sometimes for 30-45 days at a time. My story includes 4 miscarriages, blood transfusion, bruises and lots of joint swelling/pain. In my family we just said that everyone was a “free bleeder” (whatever that means) and I thought what was happening to me and my sister was normal. After I was diagnosed I became passionate about helping women get diagnosed and treated and now I am the Executive Director of The Women’s Bleeding Disorder Coalition and I am determined to fight for each of us! As women, we often put our needs last because we think someone else needs us more. We have to stand up, find our voice and demand the same treatment men with bleeding disorders receive. If you can’t do it alone then join forces with others.
My experience as a mother of PWH
It was a joyous moment when the nurse brought to me my second baby boy in Jan 1985. We were enjoying my son Vinay’s crawling period and I started noticing bruises on his ankle joints. When the doctor revealed that he is suffering from Hemophilia, I knew nothing about Hemophilia. Luckily, he didn’t have major problems till the age of seven.
When he was eight years old, he had a thigh muscle bleed and that was the time when I realized ‘What is Hemophilia’. Right from taking him downstairs and reaching the hospital which is approx 18 kms, was a real nightmare. During those days, he used to get the treatment with cryoprecipitate, later on we learnt about factor replacement therapy. Unfortunately, his tests showed Inhibitor Positive when he was eight. The frequency of his bleeding episodes increased.
I attended the Hemophilia Society Mumbai AGM in 1997 and became one of the Committee Members. I started gaining knowledge on Hemophilia through doctors, members and their families. Attending Psychosocial training at Delhi and Pune, helped me during my interactions with the Hemophiliacs in the hospital. I realized that apart from my child, there were many hemophiliacs and their families, who needed proper guidance and support. I got involved in writing minutes of meeting, making annual reports, arranging camps, World Hemophilia Day, AGM etc. The satisfaction that I got from doing all these activities, cannot be expressed in words. Gradually, I could serve HSMC as a Joint Secretary, Vice President and then President. Presently, I am the Chairperson of Women Group of HSMC and helping women to empower themselves. The women group meetings help to create a strong bond between the members and a lot of ideas get exchanged, which helps them. The thought of “Why this has happened to me” and the loneliness gradually disappears from their mind. I suggest that the women bleeders should come forward and share their experiences so that they get proper support.
Coming back to my son, he hardly attended his school from fifth to ninth standard due to frequent bleeds. Unfortunately, he lost his father at the age of 13 and the major responsibility of taking care of two sons, their studies, managing bleeding episodes of Vinay, managing finance, attending office etc was a great challenge. Luckily, we got good support from my sister-in-law who used to stay with us and took care of my children. The school/college authorities were kind enough to allow him to continue his education despite his absence. His friends too were good supporters whenever he had bleeding episodes. He graduated from college which was like a dream come true.
The most precious moment I cherish – As usual, on my return from office, Vinay handed over a letter to me and asked me to read it aloud. I just couldn’t read towards the end, as my eyes were full of tears, tears of joy, tears of contentment… I could not believe that my son had cleared MBA in Finance, and that too with a first class. He had expressed his gratitude to all of us for believing in him and for the support given by all of us. Vinay has a job, he is married, and is a proud father of a baby girl now.
It has been a long journey with ups and downs, it is really painful when your child is not able to attend school regularly or can’t go for outings or attend the functions due to bleeds. These trials made me stronger, self-reliant and confident.
My message to all Hemophiliacs and their family members….
“Amongst the darkest clouds, there is always a silver lining. Never Lose Hope, be Positive and Determined”.
My granddaughter, Mila Joan Tohill, is four years old and has Von Willebrand type 1. She was diagnosed at one years old after having a dental procedure done. I want her to grow up to be a very strong young lady to not let her bleeding disorder get the best of her. I will continue to always help her to stay involved and keep learning about her disorder to help her live a fulfilled life. She also has a sister, Ava Drew Tohill, who is one years old who she is very close too and will be by her side on this journey!
Grandma love you, Mila!
Hello I am Melissa. I am 32 years old. I found out I had a bleeding problem at the age of 12 when I would not stop hemorrhaging. It took 2 years for them to find out that I have a very rare Quantitative Platelet Disorder with a Prostaglanden Defect. I still have never met anyone like me. I have received countless platelet transfusions and blood transfusions in my life. I had to have a hysterectomy when I was 24 to save my life. I now have a daughter who is mild and I pray she does not have to go through what I did as a child and now as an adult. There are no medications or factors for me. When I have a problem I have to get Platelets. I advocate for a change. No young women should have to give up having children because of lack of care or lose there life. My journey is still going and one day I hope for a treatment or cure.