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.
Hi, I am lakshmi pavani (B.Com., LLM) now working as Court Master/Personal Secretary to Hon’ble Judges in High Court of Judicature, Hyderabad. I am from a city in Andhra Pradesh called Rajahmundry and my father is a teacher of aided school. I was born in 1978 and at the age of 10 years i.e. in the year 1987 when my father gave me disprin tablet for headache, nose bleed occurred without any injury continuously for two days; local children doctor examined and advised to go to Vellore for tests but as my uncle is in Delhi we went there for tests as it was cheap too. I was diagnosed at AIMS that I am suffering with Factor VIII-Y (VON WILLIBRAND DISEASE) by Dr.Dinesh Jain. My parents shocked of hearing that I am a VWD patient; as I am the first person in my family and after research we found that at forefathers this problem is there, but from last four decades I am the only female sufferer in my family and of course I am happy for this except me no one is leading this painful life in my family. After puberty at the age of 12, actual problem started with severe and prolonged menstrual bleed, but there was no proper guidance and treatment. I think, still there is no specific treatment for this menstrual problem.
My father want to be independent; I have to earn for myself, I have learnt the art of shorthand i.e. I can writ 180 words per minute; after graduation, I got the job as Stenographer in the year 1999. In the year 2000, my left ovary was got ruptured and bursted and in emergency I was brought to NIMS, Hyderabad and was operated. In the year 2003, I got promotion as Court Master and was shifted to Hyderabad and I am proud to say that I worked as Personal Secretary to Justice G.Rohini, who was elevated from Hyderabad as Chief Justice of Delhi Court as first women Chief Justice. After 5 fivers, in the year 2005, again my right ovary was ruptured and in emergency, operated hysterectomy at the age of 27. After hysterectomy, I got married to my childhood friend P.B.S.Prasad now he is also working in Judiciary and we have adopted a girl child.
I was suffered almost all bleeds i.e. nose bleed, abdominal pains with bleed in ovaries, psuos bleeds etc., and now suffering with target joint in my left elbow and under propholaxis from last two years; still continuing. At the age of 37 I was victim of diabetic and now hypertension too.
With the help of my parents and my husband, I crossed all the hurdles and still fighting with all pain and suffering. I am a member of Heamophilia Society, Hyderabad Chapter since 2000, but not much active as I am unable to manage all.
In my opinion for the problem of girls gynecologists role is equally important as of hematologists and still require more awareness among the gynecologists as factor will not help in menstrual bleeds.
Be bold and strong girls as the problem is manageable, be aware of the new medicines and the methods to manage the problem. All the best.
Thank you for sparing your valuable time for reading my story.
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
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.
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
Pour toute question, veuillez contacter marcomm@wfh.org.