Descubra cómo los trastornos de la coagulación afectan a las personas y sus seres queridos
El contenido publicado en este sitio ha sido subido por terceros y no representa a la Federación Mundial de Hemofilia, ni está respaldado por ella.
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 !
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.
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.
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
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.
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.
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
Mi nombre es Alexandra Robledo Riaga, soy docente, pedagoga musical para ser más exactos, tengo 43 años, mi papá, Álvaro Robledo Riaga, fue el fundador de la Liga Colombiana de Hemofílicos junto con mi mamá, Maritza Riaga de Robledo. Al ser hija de hemofílico soy portadora obligada de hemofilia. Eso lo supe desde muy niña; un poco más grande pude entender por qué mis dos hermanos hombres no tenían esta condición y yo sí. Bastaron un par de dibujos con colores sobre los cromosomas “x” y “y” para comprenderlo. Al principio me decían que yo transmitía la enfermedad (en esa época la hemofilia se consideraba una enfermedad, no una condición), pero que no la sufría. No pasó mucho tiempo antes de comenzar a manifestar ese “no padecimiento” de mi condición. Todo lo que me ocurría lo atribuían a cualquier cosa menos a tener una disminución de mi factor VIII en la sangre. Poco a poco comenzaron a relacionar que mis sangrados abundantes cada periodo menstrual, la deformidad de mi cara cuando me extrajeron las cordales, el haberse volteado casi totalmente mi pie derecho cuando me rompí los ligamentos (todo por un sangrado interno evidente) y otras “linduras” más, tenían que ver con el hecho de ser portadora de hemofilia. Vieron que yo manifestaba sangrados como un hemofílico leve. ¿Por qué nunca aceptaron esto si era algo obvio? Pues hasta en las “enfermedades” el machismo predominaba y de qué manera. Dejar de ver a la mujer como un “verdugo” que le pasa al hombre esta “enfermedad” por la cual el hombre sufre, y comenzar a verla como partícipe también de dolencias y sufrimientos fue algo bastante complicado de entender en este medio también excesivamente machista que es el mundo Médico. Fue una “pequeña” batalla que tuve que tener apoyada totalmente por mi mamá, quien estuvo hablando con muchas otras portadoras para ver si reaccionaban como yo, a lo que veían en mí. No fue fácil, por esto, convertirme en un conejillo de indias porque todo el tiempo estaban haciéndome seguimiento para ver qué tanto y en dónde sangraba o se manifestaba mi condición de portadora. Cualquiera que no supiera de esto creería que era una mujer abusada físicamente porque me mantenía llena de morados (pequeños hematomas) que me salían al golpearme levemente contra cualquier cosa. Para una persona que no tuviera esta condición pasaba inadvertido, en mi caso mi cuerpo me lo hacía notar. No se imaginan cómo quedaba cada mes luego de mis periodos menstruales… yo sentía que tenía un glóbulo rojo corriendo por mi cuerpo… la anemia cada vez se hacía más evidente y tuve que ir donde mi ginecólogo quien me dijo que tomara anticonceptivos (con muy bajo contenido hormonal) para regular y frenar un poco mis sangrados. Eso lo hice durante 22 años hasta que mi cuerpo comenzó a rechazar las pastillas. Luego de pasar por muchas otras experiencias buscando algo que me evitara la anemia fija, decidí que ya era tiempo de convencer a los médicos de hacerme una histerectomía (sacarme el útero). Desde siempre supe que no quería tener hijos, ya que vivíamos con mi papá y mi tío (hermano de mi papá), ambos hemofílicos, y ver sus dolores constantes, sangrados, limitaciones, etc, etc, etc, me llevó a decidir que si la vida me tenía destinada a ser mamá, pues prefería adoptar. En esa época la supervivencia de un hemofílico no era muy alta, los tratamientos eran muy costosos y no había todo ese cuidado preventivo que existe hoy en día. Por eso a mis cortos ocho años ya tenía decidido que prefería darle la posibilidad de tener un hogar a un niño sin padres, que tener yo un hijo propio. Además, a mi condición de portadora se le sumaba una situación con mis riñones que hacía que tuviera un embarazo de altísimo riesgo para mí si llegaba a quedar embarazada. Por eso mi decisión. Por otra parte, al ser docente, he estado laborando con personas de todas las edades, en especial niños y eso ha cubierto una buena parte de mi cuota de maternidad.
Durante muchos años hice parte del staff que apoyaba a los hemofílicos, portadoras y sus familias en Colhemofílicos, haciendo lo que llamamos Terapia Lúdica. Era una agradable manera de hacer ejercicio sin sentirlo. ¿Cómo? Con lo que más nos ha gustado hacer a los humanos por siempre…. Jugando! Al jugar estamos abiertos al goce, a la diversión y a relacionarnos con otros como niños y eso hace que las limitaciones físicas que podamos tener pasen a un segundo plano y sin proponérnoslo vamos haciendo estiramiento y fortaleciendo los músculos. A la mayoría de nosotros no nos gusta hacer ejercicio, pero si nos dicen bailen o jueguen es otra cosa!
En este momento me dedico a ser docente y todo lo relacionado con la salud en otros niveles (no tanto lo alópata) me interesa muchísimo, porque me he dado cuenta a través de mi vida, que no podemos ver al humano como un conjunto de partes sino como seres integrales a quienes todo lo relacionado con nuestras emociones y sentimientos se traducen a nivel físico en dolencias y mal-estares.
I’m a 33 year old female and I have mild hemophilia with levels at 14-18%. I was diagnosed at 10 years old. I fought for many years to stop being called a symptomatic carrier to ensure proper and equal care. I am now on prophy and it changed my life. It opened my eyes to see how I should be feeling every day. Advocate for yourself and advocate for equal access to care – women bleed too!
For many people with bleeding disorders, pain is a part of daily life. More than an uncomfortable annoyance, pain can affect every aspect of daily life—the ability to work a full day, attend school or engage in routine activities. Pain can limit physical abilities and dramatically affect relationships.
Every person with a bleeding disorder deals with pain at one time or another, often less than effectively. As a female bleeder (factor 5 deficient) – “It’s at the point where I’ve learned to live with the pain and live a anxiety and panic free life.” “Very little is needed to make a happy life; it is all within yourself, in your way of thinking.”
People with bleeding disorders should remain alerted when it comes to new or different pain. New pain could signal a bleed or an acute pain that needs treatment before it becomes chronic.
Recently, a few days ago I suffered from acute pain in the stomach at midnight. Immediately my dad rushed to bring in FFP (Fresh Frozen Plasma). On the next day also pain continued but it was little bit subsidized. I continued to take plasma for the next 2 days and simultaneously went for Sonography. It was concluded in Sonography that the cyst in ovary got rapture. When you feel pain, the first order of business is to identify the cause and eliminate it, in my case I first took the remedy as the same pain I have gone through previously also and it couldn’t be assumed that it could be a normal gastric pain or any other.
“It seems so simple, but most people with pain don’t think about
what caused it.” People will usually immobilize or do something to
relieve the discomfort at that moment, but not think about what caused it. The number one thing is to identify what the probable cause is and stop doing that.
I may be pessimistic in some things but related to problems of hemophilia I take it as a challenge and face it bravely so that it doesn’t make me weak in any aspect as I think I am very much close to God because he has chosen me for this. I’ve become more flexible in that respect. Changing a difficult situation isn’t always possible. By making a conscious effort you can train yourself to be more positive about life.
I am not a person who shares the pain to get sympathy and to be in the center of attraction, I don’t like this all things. I don’t want the people to say ‘poor girl’ etc., In fact, I want the people to say look at her such a brave and lively person. Life is forward momentum. If things are already feeling hard, why choose a miserable perspective to compound the despair? It can be hard – A heroic effort, even – to stand in the pain and choose an empowering way to look at a situation. Problems are often a question of perspective.If you change your perspective, you may see your situation from a more positive point of view.
recently, on 28th November while driving to office I met with an accident and got fractured in my left leg. When I was taken to the hospital; doctor informed us that Tibia bone is broken and surgery is needed to fix the bone. I started crying aloud that I don’t want any surgery to be done.. Luckily by the grace of god doctor said that bone can be fixed with the help of cast but that needs to be kept for 1 and a half month. Me and my family were ok with that; as been a factor 5 and Fresh Frozen Plasma is the only treatment – risks factors increases for surgery. 10 days after cast was placed on leg were terrible because of acute pain. And due to all this I got pissed off. I started questioning to god that why me? Every time God puts me in tough and hard circumstances which makes my confidence level drop down. All this time I am being reminded on a daily basis that the only one stopping me is me. I want to be unstoppable.
Last but not least I would say – “Something will grow from all you are growing through and it will be YOU”
“Women Can Be Bleeders Too”
Si tuviera preguntas escriba a marcomm@wfh.org.