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Iranian women and girls have menstrual bleeding in women eye for eye invitees About World Hemophilia Day to speak and tell of your problems

من همابهروزی هستم 47ساله از تهران حدود 5ساله دچار بیماری ام اس دیابت لوپوس و هموفیلی شده ام اختلال در فکتود یک.سه.هفت.پنج.نه از فاکتور هفت استفاده می کنم خونریزهای،شدید از نقاط مختلف بدن من باعث شد چندین نوبت شیمی درمانی شده و خونم دچار مشکل شود
خواستم بدانید زندگی هنوز در جریانه و من هنوز زنده ام

I’m 37 and I have a 5 year old son with type B factor 9. He is also being evaluated for AD/HD. It has been a struggle with having to keep him calm down so he doesn’t hurt himself. It has happened quite often.It runs in my family my brother, 2 nephews all have type B along with Ad/hd. My two sisters and I are carriers. Our kids has the best hematologist Dr. Singleton at Tulane medical center and the greatest team.

My family and I lived in Zarqa – Jordan. It was the first time we know about hemophilia after the birth of my first child. At the beginning of my child’s bleeding after circumcision I went to the nearest private hospital. After the tests, the doctor told us that he would prefer to go to a public hospital with the possibility of hemophilia.
At the Zarqa Governmental Hospital and after knowing the type of the missing factor ,he was given factor 9.
I ‘ve been told by the doctor that if you see any bruising or crying of the child for no reason, bring him directly to the hospital.
Two weeks later, my child was registered at the Hemophilia Center in Amman and we received enough information about the disease. The treatment plan has been developed by the center, If the factor is available, the patient can be given once a week.
I love Hemophilia ❤

Bonjour.j ai un fils hemophilie B age10ans.marocaine je ai pas de moyen.pour aider mon fils je ai seulement mon dieu qui M aide.je ai peurunjour devient andicape

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”.

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.

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.

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.

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 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.

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