[Born with Von Willebrand Disease, low Factor 8, and Ehlers Danlos Syndrome] I was the first of my family to receive a diagnosis of vWD at 19 years old following 5 years of continually menstruating and requiring weekly iron infusions whilst still anaemic. I suffer from mucosal bleeding, muscle bleeds and soft tissue joint bleeds. Now managed by prophylaxis. After 8 years of persisting my fight for adequate care, at the age of 27 I finally obtained access to my blood product treatment. It has significantly changed my life and my period is 4 days long now. This was largely due to the lack of medical data, education amongst clinicians, and awareness globally. I shared my story to the world on 17th April 2016 which went viral globally, it has connected me to hundreds of thousands of women around the world also affected by bleeding disorders and still counting. I am personally committed to being an global advocate and actively partaking in this positive change for women. THANK YOU World Federation of Hemophilia for ‘Hearing My Voice’! <3 Chloe Christos
Hello fellow bleeding disorder friends.
I was diagnosed with severe Von Willebrand’s Disease in 1990 & Platet Storage Pool Deficiency in 1997.
I identified as a Hemophilia treatment clinic patient for 2 decades -receiving Stimate, Lysteda, Humate-P, Iron Dextran infusions ad nauseum-until a VERY sharp HTC nurse identified criteria consistent with “something more” & referred me to a geneticist in 2010. After my severe Classic EDS diagnosis, 4 more relatives were identified with severe EDS, 2 with moderate, 1 with mild. Identification of EDS was the crucial element to getting referrals to the specialists needed to treat the debilitating co-morbidities that came with the defective connective tissue diagnoses. I am now 3 months post-op from a Chiari Malformation decompression & fusion of my skull to C1 & C2. The associated osteoporosis is being successfully treated, I am scheduled for C4-C6 fusion in June, I am receiving treatment for Dysautonomia/POTS, and I am receiving specialized EDS physical therapy targeted at my loose joints.
None of this would have been possible without my Hemophilia Treatment Center doctors & nurses!
Eu me chamo Shirley, sou de São Paulo/Brazil. Sou mãe de 4 filhos, o meu filho mais novo o Felipe, foi diagnosticado aos 11 meses com hemofilia A grave >1% . Descobrimos a Hemofilia quando o Felipe sofreu uma queda e bateu a cabeça, ele teve um grande sangramento e causou uma meningite. Foi um grande susto pois não temos casos de Hemofilia na família. O Felipe passou a ser acompanhado pela equipe de Hemofilia do Hospital Brigadeiro aqui em São Paulo, onde recebe profilaxia duas vezes por semana fator VIII, todo o tratamento é gratuito, o governo nos disponibiliza o fator VIII gratuito, isso é maravilhoso pois não teríamos condições de comprar o fator pelo alto custo. Meu filho é bem assistido, agradeço toda a equipe de médicos e enfermeiros que cuidam do meu filho. Depois desta internação o Felipe teve outro trauma na cabeça e precisou ser internado novamente, são as intercorrências que a Hemofilia trás. O que precisamos é estar sempre atentos a socorro imediato, e sempre contar com o reforço dá profilaxia que nos permite ter uma vida feliz e normal.
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”
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 !
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.
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.
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.
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 .
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 Ana Almendares, en mi familia la hemofilia facto Vlll severa es hereditaria y la vida me ha preparado desde mi infancia para entender, comprender y aceptar esta deficiencia sanguínea. Agradezco por todo lo vivido, ya que fue lo que me ha ayudado a Orientar y guiar a mi hijo Ignacio que hoy tiene 18 años y hasta el momento ha logrado crecer, vivir y aceptar los procesos de su vida con fortaleza, optimismo y mucho amor.
Gracias por dedicar un tiempo a las madres, se que muchas, que no tiene un histórico en su vida, el desconocimiento de esta deficiencia sanguínea, les produce mucha angustia y frustración, sobre todo por no saber cómo resolver y lograr mantener la calidad de vida de su hijo y familia.
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
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