Bonjour je suis maman d’un petit garcon atteint d’hemophilie A sévère. Maladie que je ne connaissais pas avant qu’on le diagnostique à l’âge de un an. Durant sa première année de vie je savais que mon fils avait quelque chose car il attrapait facilement des bleus avec une boule. J’en ai parlé plusieurs fois aux médecins qui me répondaient tous la même chose (c’est normale c’est l’hématome). On ma également accusé de frapper dessus car juste le faite de le porter a bras on apercevait la trace de mes doigts sur son corps ! Aucune analyse n’a jamais été faite pour savoir si il avait un problème personne ne voulait prendre son cas au sérieux jusqu’au jour de ses 1 an ou une opération était prévue car il est né avec un testicule pas en place et qui devait être replacée avec une opération sous anesthésiste. J’ai expliqué au chirurgien qui devait opérer mon fils qu’il faisait facilement des bleus et le trouvant très pâle une prise de sang approfondie a ete prescrite par celui-ci.
La prise de sang a été un vrai calvaire car on a du le piquer plusieurs fois dans les mains jusqu’à ce qu’on parvienne a avoir du sang car les veines étaient fragiles et difficiles. De retour à la maison mon fils était très difficile et ses mains faisaient que gonfler, gonfler à tel point qu’il ne savait plus rien tenir avec ses mains et la j’ai couru aux urgences de nouvelles prise de sang ont été faite et la le diagnostique est tombé.. Mon fils, mon bébé est atteint d’hemophilie sévère.

I am a mother of 2 boys with severe Haemophilia A. Coming from a lineage of 3 carriers, I still was surprised when my first son was born because my great grandmother, grandmother and mother were never diagnosed. Also between them 13 sons had died. My first son had 7 blood transfusions in his first 8 years as there was no treatment in my country. As a mother of two bleeders with presents with easy bruising one should think of bleeding disorders in me, but Luke most women NO. 2 years ago I decided to have a factor assay done and found out I have 32% of FVIII activity. That changed my life as I now know why I bruise easily, have this heavy bleeding at childbirth and how to handle myself.

I had extreme nosebleeds (gushing, 2 hours long, etc) throughout childhood and prolonged dental bleeding. When I was 12 I got my period and it was a nightmare from the start. 10 days long, clots, debilitating cramps all kept me from school and activities every month. I was put on the pill at age 16 and told I was anemic. (I never had any fingernails and ate ice constantly, not realizing the correlation!)

After childbirth I bled heavily for 7 weeks. I loved how I felt when I was off the pill, so I tried to stay off after my daughter was born. I got my period back when she was 10 months old, and it got progressively worse throughout her toddlerhood. I had 4 unexplained miscarriages, and went to 3 different doctors, complaining of my bleeding. One female doctor told me, “That’s why they call it The Curse”, and did no testing. I finally got a GYN to take me seriously when I told her how much blood I was loosing (an average period is 30ml of blood – the entirety of a menstrual cup. I was emptying my overflowing cup every 60-90 min for the first day or two, and every 3 hours for the remaining 6-8 days). When she did a CBC my hGb was 5.5.

I was referred to an HTC, but I had a hard time getting them to take me seriously as well. I begged them to run a platelet aggregation when nothing else showed up, and it revealed a platelet disorder called Aspirin-like Defect. Even after diagnosis, I had a difficult time obtaining treatment. I could not get my HTC to give me a referral to an ENT so I could obtain a cauterization for my daily 1-2 hr nosebleeds that had been going on for over a month. I also could not get any treatment offered to me except for birth control and Stimate. Stimate did nothing for my bleeding; I bled so heavily on the Mirena IUD that I expelled the first one after 2 weeks. I tried that regime for 5 months and could no longer take the daily bleeding and side effects of Stimate, so I opted for a hysterectomy at the age of 38.

3 weeks after I was diagnosed, my then-5 year old daughter was, as well. She has random bleeds now that can be managed, but I know what she will face when she hits puberty. When I became an advocate for her, I understood how much had been lacking in my own care and treatment options. Her story will never be like mine. She will receive specific treatment for the actual disorder she has – not just birth control. She is 7.5 now, and I hope research will catch up in time for her first period.

Thank you for creating this space and drawing very necessary attention to women with bleeding disorders!!

My name is Jacqui and I have von Willebrands type 1. I was diagnosed about 12 years ago when I lived in the UK. A friend and I capsized in a canoe. About an hour later we stopped for lunch and as I stood up to put on my jumper I heard a huge number of involuntary gasps from those in the canoes behind me. I had bruised very badly all down my legs and my friend had minimal bruising. After that I went to see the doctor and insisted he run some blood tests to find out what caused this level of bruising. My results indicated a clotting issue and I was referred to the haemotology department at my local hospital. I struggled for adequate care and a diagnosis for some time, as the Haemotoligists specialised in blood cancers or haemophilia. I was told once by a Specialist that I didn’t have VWD, I was just a fat and short woman and that’s why I bleed abnormally. Sadly I was alone on that consult and no one else witnessed him saying that to me. As a result of this lack of care I went through five midwives and had the on call Haemotologist called out during labour to have my son. She was appalled that my notes said that due to me having VWD type 1 I needed no additional care for me or for my baby. I ended up having an emergency c-section after treatment with the tranexamic acid I’d brought into the hospital myself. Afterwards a new Haemotologist joined the local team and my care was vastly improved. I was re-tested and my VWD type 1 diagnosis confirmed. I was tested for DDAVP use, given Hepatitis B vaccinationsn and added to the national register of bleeders in the U.K. This register is useful in itself, but also helps to plan how much plasma store is needed. I moved to Australia almost 5 years ago and have only recently got a referral to a Haemotologist. My GP kept insisting that I didn’t need to be under the care of a treatment centre. One of the things that made me fight for the referral was reading an article written by another woman with the same condition; Chloe Christos. Through Chloe I have made contact with hundreds of bleeders around the world and learnt so much about bleeding conditions and treatments. I like to say that I had sought help before, I had gone to the doctor at 19 to discuss my very heavy bleeding during my periods and been told that it wouldn’t be looked at till I decided to have children. I am now 44 and have endured half a lifetime of inadequate care related to my bleeding condition. I love to say I was an exception, but I’m not. I regularly hear from women who’ve had similar experiences. Hear my voice! I will be fighting and advocating for proper treatment for me and others.

Being the 4th child in a family of 5 children, I grew up knowing my older brother was different to other boys. Mum never let him play “rough” games, and there were the frequent trips to hospital. In the 60’s the only treatment was blood transfusions, which meant a day or over night in the hospital for my brother. In the mid 70’s they developed a test for females of families with a history of Heamophilia to detect the “markers” for the affected gene. My older sister was working at the RCH (Royal Childrens Hospital)at the time, and heard about the test. I was in my teens and thought it would be good to know. Had the test, though it was in the early stages of development, it showed I could be a carrier. When I started dating, and later married, my husband and I had many discussions about the chances of having a boy with Heamophilia, and decided we would deal with what ever we were blessed with. In 1983 I found we were pregnant. All went well through the pregnancy, and on December 2nd, after a long labour, we were blessed with a baby boy. I insisted he be tested, and after some discussion with a pediatrician, they did the blood test and told us he had Heamophilia. Life was pretty normal for the first 8 months, well as normal for a couple with a new born can be. We decided to visit my parents who lived in Footscray, Melbourne. Being that we lived in Colac, Victoria, it was a 2 hour drive. When we arrived at my parents, getting bub out of the car seat, he started to cry, not knowing why, I just thought he had a wet nappy, so I started to changed him. As I was moving his left leg, he cried louder. My mum said it wasn’t good, and we should take him to RCH knowing my brother had Heamophilia, I didn’t argue. We went to emergency and told the about my brother, and my test results, and my son’s results, and what was happening to my son. They checked him over, and contacted a member of the Heamotolgy unit. My son had his first bleed, in the hip joint. Sitting in the car seat for so long, had put stress on the joint and started a bleed. He was treated, with Factor VIII, admitted to the Heamotolgy ward for observation and any further treatment as needed. The next day we were introduced to Prof. Henry Ekert, and his staff. They went through all the information on Heamophilia and all the new advances in the treatment and care of a boy with the disorder. The one piece of advice I have always remembered from Prof. Ekert was my son was a boy with a bleeding disorder, let him be a boy and don’t wrap him in “cotton wool”. That was the start of many visits to the RCH for treatments, check ups, and information sessions. We moved to Sunshine to be closer to the hospital, after divorcing my husband. Long story, short . . I remarried, and along came son number 2 . . .2 for 2 . . .he has it as well . . .more trips to RCH . . for a a while I was attending the hospital, for one reason or another, aprox. once a fortnight. But as they grew up, and learnt how to look after themselves, trips to the hospital became less frequent. And now they are both fine, healthy young men. The oldest(33) got married last year, and lives in Canberra. No grandchildren yet, but hoping soon. The other son(25) is not sure what he wants to do. And just recently we have found out their 22 year old sister, my daughter, is, also a carrier. As we have seen in the past 50 + years, research has given our boys better and safer treatments, detection of the “carrier” gene, and who knows what the future will bring.

I’m not going to talk about Hemophilia in the World Hemophilia Day, because it is ordinary for other people doing that. I want to do something different, something like a related story and gratefulness.
Let’s start with story part. I was born with Hemophilia without inheritance. It means I got this disorder gift from nowhere just by a chance that’s lower than winning lottery. However, Hemophilia brought us no joy nor pride, but sorrow and fear. It is my own misfortune, but since I was a kid, it has been a big worry for my family, especially my mother. She has been worried about my disorder really long ago before I knew what worrying is.
My mother was there when the pain tortured me at nights. Nights, not night. More than ten years ago, when Vietnamese people don’t know what clotting factors are, cryoprecipitate was the only chance for us, people with Hemophilia, to stop bleed and pain. But the fact is we didn’t have enough cryoprecipitate to completely solve even a joint bleed. Therefore, pain follows me to the nights. I couldn’t sleep, I couldn’t rest, I couldn’t even move because every single movement could hurt me extremely bad. Someone told me “The pain you suffer from Hemophilia is something no one can share”, they’re right and wrong. My mother couldn’t take the pain for me but she shared those dark moments with me. She stayed awake beside andgently rubbed my swollen joints. Now I know rubbing is theoretically bad because it makes the bleed worse by speeding up bloodflow, but at that time, her light rubbing helped me a lot. My pain was reduced slightly, enough for me to take some little nap. Thanks to her, I could sleep about five times a night, ten minutes each, give or take. Those ten-minute-napsmeans so much for a kid who could do nothing but squeezing his own limbs in pain, crying and staying awake the whole night, and few nights after, until the bleed stopped.
The pain caused by Hemophilia is really unique that no words can truly describe. I have grown up, so have the pain. I don’t yell or shout anymore, because I’m an adult, but I still cry silently and helplessly when deep pain visits. Other adults patients feel the same way as I do about deep pain, they can’t help either. Hemophilia’s superpower is to make an adult cry like a baby.It’s the truth thatanyone with severe Hemophilia who has experienced all the pain without treatment wouldunderstand. My mother is not with Hemophilia but she understands it completely, because she has witnessed her son, who is about 0.04% active factor while bleeding, writhing in agony for years.
Therefore, my mother cares about me so much, sometimes she overcares, and I understand why. There are times I feel troublesome and awkward, however I still acknowledge and appreciate. She drove me school, she drove me hospital, she brought me from places to places in search of someone or somethingthat can cure me. She spoonfed me when my arms were immobilized hurt, she rised my leg when my knee was terribly swollen. She is the one brings me lunch regularly when I stay for long treatment. She cried when I cried.When I went to secondary school and accidently got hurt, my mother carried me on her back many times to the motor; my father did it, too, but he is a strong and tall man. Could you imagine a woman had to carry her son who was taller than her, on her back? Do you like it? I do not. She said to me, “No matter what, my knees are stronger than yours”, and forbid me from climbing down. Since I was a highschooler, clotting factors became common and I can handle the pain on my own most of the time it happens. Though, sometimes symtomps are still out of control, I silently cried a lot at night, and my mother still knows somehow. She came to my room, rubbed my limbs gently like old days and decided to stay but I refused so that she can have her sleep. I can’t let her stay awake with me whole night anymore.
Thanks to my mother, I can steadily live with my Hemophilia.My mother never leaves me despite the fact that some parents abandoned their Hemophilia children. You may wonder why I jump to gratefulness part while we’re in story part. Because this story never ends, it’s being continued everyday, and I want to say thanks to my mother in the World Hemophilia Day, with no delay.
To the best woman in my life: Thank you so much and love you, mom.

I’m Raebecca. I’m 17. I was diagnosed with severe type three von Willebrands Disease when I was about six months old. I was the very first to be diagnosed, but my parents and siblings also have it. I struggle with joint and mouth bleeds. I found out I had arthritic tissue in my knee when I was ten. I’ve had 2 what I consider to be near death experiences. I struggle sometimes, but I fully believe my disorder had made me a harder worker and a stronger person. It has pushed me to raise awareness and pushed me towards a career path I’m passionate about.

HI, I’m Nataraj, 28 years young male from India. I’m a person with severe Hemophilia A. Though I was showing symptoms since 3 months young baby, I was diagnosed only at the age of 6 (Fortunate enough I believe, lots of people are not diagnosed even till the age of 50+ years in their life, due to lack of awareness). Till the age of 6 my parents consulted about my condition with many doctors but not use because of lack of awareness. At the age of 6, I fell from hay stack and landed using my right foot which caused severe bleed in my right ankle, it was at that time only one doctor refereed me to a hematologist, that hematologist only suspected I may have a bleeding disorder and point us at right direction to Christian Medical College(CMC) Vellore, where I was diagnosed with Severe Hemophilia A. Ever since I was restricted from physical activities like playing and sports due to fear of injury. But , I was advice by mother to do things slowly and carefully so I may not end up in pain. I took her advice and I believe that saved me from lots of pain and protected my joints well. As the years went by we consulted many doctors in different medicine field, tried so many medicines, but what ever they promised never worked from me. At the age of 14 I lost hope in all the medicines and slowly started giving up on them. I focused on training my mind and took medicine only when I was not well. Due to lack of physical activity, I was gaining weight, by the age of 16 I was about 80kg. I wanted to reduce my weight so badly, and it was also causing problems in my joints. I started walking, cycling, but I was never able to reduce my weight, I never gave up on trying to be active. I exercised when ever I could. 2009 I attended my first youth camp where I learned about the importance of physiotherapy. I tried my best to do physiotherapy regularly and with in 6 months I was able to feel the difference at my target joint. In about 2 years I was able to recover my target joint and also that kept me away from getting spontaneous bleeds. I gave me more confidence and hope, I was turning point in my life and I started to involve more in our chapter activities, my passion to help others like me, made me stronger and healthier. I became the regional youth representative of south India for Hemophilia Federation (India) and seeing my enthusiasm our chapter secretary requested me to become the president at our local chapter. Our lobby with our city government hospital resulted in faster treatment and better awareness among the doctors in there. Now were are trying with nearby city government hospitals too. Since the beginning we are giving equal importance to females with bleeding disorders and they are also treated equally at the government hospital. We have identified about 15 females with various bleeding disorders and got them registered at our chapter. Since July 2014 I changed my diet to very nutritious diet and was able to reduce about 25 kgs in 2 years time. This not only improved my quality of life but and also showed me an alternative way to lead a healthy life with hemophilia with out / less factor treatment. Now I can jog of about 10km and do workouts also. I’m sharing my experience which changed my life with others, those who tried also replied me with a positive response.

After many years of muscular-skeletal injuries and digestive system problems myself and my two daughters were diagnosed with Ehlers Danlos Syndrome just over a year ago. My youngest daughter gets scarily bloodshot eyes every time she’s sick with anything at all, my eldest daughter frequently has blood noses. One of her blood noses was so intense she bled through a bath towel and blood was streaming out of her eyes like a tap. I also have frequent blood noses, heavy periods, and when I gave birth to my eldest daughter I lost over 2L of blood. We all bruise very easily.

I feel like a lot of doctors are unfortunately too busy/overworked to piece together the big picture for their patients. You have wrist pain and a ganglion, see a hand ortho. You can’t swallow water, let’s send you to a GI doc. You’ve had pregnancy related complications, oh that just happens in some women. Finding a knowledgeable primary care physician or general practitioner who looks at things holistically can make a huge difference in your care.

Im sharing my journey with vwd on behalf of my 14 year old daughter. I first heard about Von Willebrands disease just a few months ago. A little background on our journey so far, my daughter started her periods at 12 years of ago, everything was ok until around 12 months ago when she started getting extremely heavy periods that would sometimes last a month, over the past 12 months my girl has endured countless blood tests, iron infusions as she is more often than not anemic, this past month she has started fainting due to low iron stores as well as low blood pressure, she isnt able to take iron tablets daily as her iron stores the get gar too high quickly and has to go off them, she is rarely able to last a week at school and if she lasts she comes home and sleeps for hours and will wake to eat, interact before sleeping again until her alarm for school goes off, its very much on a day to day basis as to whether she will attend school. So far we have not been able to be successful with getting a treatment plan in place for my daughter as official diagnosis has only neen very recent through a very lax hematologist. My girl feels very alone in her journey as she is the only one in our family with vwd, she is exhausted and frustrated that her young teen days are spent in her room instead of out enjoying life with her friends. I will continue to be my daughter’s voice and will not stop until we get treatment sorted for her. Its exciting that WHF day is focusing on women and young girls with bleeding disorders.i know our story is a very familiar one but i do hope that getting our experience so far out there can be helpful to somebody. Vwd is a very lonely journey at times.

Hello friends,I am Dr.Prajkta Kulkarni from Pune,India.I am Anatomy professor.I have 2 sons.Elder one is 10 yrs. old non-haemophilic and younger one Areen is 2 yrs.old with severe factor VIII deficient.He was diagnosed on the 6th day after birth in NICU after per rectal bleed.Since then our lives have changed a lot.He has recurrent intramascular bleeds every other day .The most worst was tongue bleed as he lost much weight during that period.I am waiting eagerly for gene therapy just like all hemophilic families.I work for creating awareness and fund raising for the hemophilic society by articles and lectures.We have no family history .Spontneous mutation may be the cause as per doctors.As inj.is expensive, it is indeed a Royal disease in that regard.As a mother ,it’s really difficult to see him with pain.Hopefully gene therapy would give a relief to all brave hemophilics !

My parents were first cousins, and got married according to the cultural norms in Pakistan. At that time, there was absolutely no history of inheritance of bleeding-disorders in the family. I was their first born. Parents love and care was unconditional. Unaware of my destiny, I began to grow. My mother noted easy bruising in infancy and became concerned. Doctors who were unsuspecting reassured her.

My first encounter with this disorder happened, at the age of one year. Traumatic lip-cut landed me, hemorrhaging in the hospital. At that time, I had my first blood transfusion, to deal with the low Hemoglobin. I always got big bruises for no apparent reason and tended to bleed unusually from minor injuries. My parents took me to hospital and tests were done, where they found out that I had an “abnormal bleeding tendency” which was the diagnosis then. Eventually my father applied for a leave, sold off some property and took me abroad to sort things out. We were finally told that I had Von Willebrand Disease [vWD], which if required treatment meant whole blood transfusion, or Fresh Frozen Plasma [FFP], which ever was available. The diagnosis of “VWD – Type III” came twenty years later. The word “abnormal” stuck in my parents mind, they were devastated. I was taken to various blood specialists, but with no laboratory backup and expertise, the anxiety built up. In Pakistan, my treatment was the regular dose of whole blood transfusions for all bleeding episodes, falling teeth was one of them.

Socio – cultural and religious norms in bringing up a girl in our society are quite defined. My parents decided to confront the conservative outlook. I was enrolled into a good private school, to help me be independent, have a profession and be a woman living a life of dignity and integrity. Armed with confidence and good education, I easily got into prestigious medical school and qualified as a doctor. Defying all the odds, I pursued a successful medical career, got married, and had a child. My daughter was born in UK. The normal delivery ended in profuse post. Partum hemorrhage. Treatment was given with cryoprecipitate & Inj. Factor VIII conc. No response! Tested & I had developed inhibitors. The Doctors were very frustrated as no treatment was available. Same how I survived & come home after 2 month’s long stay in hospital!!

Although my whole life journey has been with many ups & downs but I have never accepted defeat. I heard about the Pakistan Hemophilia Patients Welfare Society [PHPWS]. I work full time, as a volunteer for this cause in my country. Being the key person of the organization, I am a role model, a social worker, a family counsellor, a genetic counsellor and a support system in psycho-social problems of my PWH. I have a very supportive and loving family, and an amazing group of friends and well-wishers, who are there for me, when I battle, as I live this unexpected life.

““My positive attitude was overcompensated for my bleeding disorder and I got everything in life, that I asked for or I didn’t asked for”

“The problem now is Factor VII recombinants, which is not affordable in Pakistan. My life depends on donated products form donor agencies across the world”