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.
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’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.
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.
Fatima:
In patriarchal communities where the man is the first family member and the women always comes second, deficiency and illness in women is counted as a crime, a sin. You’re always under the gaze of your husband and his parents. My name is Fatima,l am from Iran, I am a carrier of Haemophilia. I have two sons who both suffer from the severe type of Haemophilia (type A). Most of my problems were over a long time period. So much bleeding that it usually lasted for ten days. I was twenty years old when I became a mother and I had two stillborn children. I recall the doctor saying, “she too is bleeding”.
I had an abortion once but because of the laws in my country at that time abortion was illegal. My doctor did it secretly in her office. After that I was bleeding for forty days and as a result needed another operation. A few months later I saw my doctor on TV. She was under arrest because a women died in her office whilst having an abortion. I thought that it could have been me.
With all of my problem by bleeding and my children illnesses and my husband harassment and also without commitment versus of life and our children, I decided to be a strong woman and took care of my children.
From hemophilia office called me and asked me for helping to the other patients in my eparchy.
After I got permission from my husband which it was really hard, I started working. It was an office in blood transfusion center and every things goes well utill our office was a best office in our country .
My husband left me and my children, now I had responsibility of our life ,my children and I. I have worked in hemophilia office and subsistence by marketing and I interd to university.
To my children problems added one more thing, Hepatit C! And it was really break my heart . Also most of the hemophilia children had this promlem too, Hepatit C.
Now I am a member of hemophilia society and for a while I was president .
Now my children are under treatment for Hepatit C, I hope they will be well.
Hepatitis society of Iran invited me to helping as a internationally.
I want be useful for myself, my children and also the other people in the word, and always only GOD was helping me.
With respect
Fatima Sheidaei
From Iran
Hemophilia..! I hadn’t heard this name before year ago, when my health condition was too worst, then I got know I was Hemophilia person.when i was kid i used to play all outdoor games, i had so many injuries.whenever I get injured, I bleed spontaneously. docter’s also didn’t tell about this, cause they were also not aware.after 26 years when I was suffering bleeding in my hip, I was afraid I just felt like am I going to die? I took so many medicines, I realize this is not something that we can cure so I have decided to die, but I dont know suddenly what happend. I googled and I found something similar between my hemophila symptoms and my condition, so I googled again n again and I found very much similar then I found a website called Hemophilia.org. I was tired of this pain so I have mail delhi chapter, and Kolhapur. then some person came into my house he told me if you are really hemophila person we have make some tests then after 4 or 5 days I have checked blood and they have found I was severe Hemophilia B person. I wasn’t shocked beacause somewhere I knew that might be I will be wrong but I wasn’t.
I am not blaming doctors, am just saying everyone has to aware about this hemophila thing so no one will suffer.I went once seminar and I found so many people like me and I realize I am not the only who is suffering.so I am different person not as patient but special. we all are specials. i just want to say don’t loose hope. hope is the one thing you can keep yourself alive.
When I was 12 years old I had a tonsillectomy nine days later I woke up haemorrhaging from the site of removal was taken by ambulance (and had a helicopter on stand by) to the John Hunter Hospital where they took my into theatre for a ten minute procedure to quarterize the site they attempted this three times without success, they decided to suture the area but when the attempted to wake me up it didn’t hold I was then put back under anaesthetic and they sutured the area again this time putting me into an induced for 24 hours. I was in theatre for 6 hours and required three blood transfusions and factor eight. This was when I was first diagnosed and with Von Willebrands disease
A few months later I started my first period within a few months of my first period I started seeing my first gynaecologist since then I’ve seen several different gynaecologists trialling different hormones to help with my period, I’ve bleed sometimes for months and years straight without a break in between. This limited me from doing a lot of things even school I’d have a lot of time off of school due to passing out or due to the point that I could not sit threw an entire 50 minute lesson without needing to leave to change pads not just one but two or more. I’d have to sleep with towels so I wouldn’t bleed onto the bed. For me a light day was being able to wear one night time pad instead of two or more maternity pads, sometimes I’d even wear diapers with maternity pads. Occasionally I’d pass out during tafe or school and need to be taken away by ambulance. I’m 16 years old now and still have proper solution other then trail and error with hormonal treatments that can have horrible side effects
Hola, mi nombre es Paula Flórez tengo 37 años y tengo un desorden de coagulación . Fui diagnosticada con trombopatía de granulos alfa. He recibido varias transfuciones de plaquetas ya que es la unica forma de tratar las hemorragias . Yo no puedo tomar ningun medicamento . Ya me hicieron la histerectomía pero gracias a Dios tengo dos hermosas hijas . No conozco a nadie mas que tenga el mismo diagnostico . Saludos a todos y espero que De la mano de Dios todos tengamos la valentía de enfrentar todas las pruebas dificiles de la vida .
My son his name is Master Chandra Prakash Sahu when he was just 3 months we seen on his body part green and blue color patches. We been to the child specialist he said these are the normal thing don’t worry about it. But day by day he was growing his activity was incrising very fast. And whenever he got fall or he bang on any place his body part become green and blue which is take very long time to recover so we went another children specialist doctor he said go for factor VIII & XI test so when report came he was elected by factor VIII but doctor said I don’t believe on this report please you go to another biggest hospital for the test so after few days we been to CMC Vellor again we gone through the all the medical test there we came to know that my son is effected by severe hemophilia A.
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