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”
I was diagnosed with type 3 von Willebrands disease as a baby. My parents were uncertain on what was wrong for some time – I was covered in bruises from the time I started learning to walk. Doctors were very judgemental and even accused my parents of physical abuse. It wasn’t until I bit my lip and almost bled out overnight that they started taking my parents seriously. That was when the path to diagnosis began. I count myself very lucky that I was diagnosed so young, as I have been able to manoeuvre through the challenges presented by VWD with the dr’s on side – to an extent. My sister – three years younger than me was diagnosed shortly after birth, as they suspected that she would probably have VWD too. We lived in rural NSW at the time and actually had to move towns as the hospital wouldn’t offer my mum pre or post natal care due to the risk. Living in the country we had to make an annual trip to the closest HTC to check in with our team. If any bleeds happened and we had to go to the local hospital, we spent a lot of time arguing with the ER dr’s on how to treat us, which almost always ended up with dad calling the hematolgist who would then call the hospital back and pass on a piece of her mind!
The isolation has always made treatment difficult, but since moving to the city I have always been so impressed with the rapid response from my hemo teams whenever I have any issues – even if it isn’t a bleeding issue.
I have found that as I get older the patterns in my experiences have changed a lot, for example I rarely experience severe nosebleeds as I have in the past, but now seem to have joint bleeds a lot more often. It has been interesting working through these changes now as an adult.
I hope that world haemophilia day this year helps increase awareness of all bleeding disorders, and especially in women. It would be amazing to one day be able to visit the GP and have them tell me what my symptoms may mean – instead of the other way around!
My name is Debra Margolin and I was born with the type III Von Willebrand’s disease I have 0% and it’s not more than 3% Factor 8
I am currently 54 years old so that when I was born the only thing that was available to me at the time was plasma.
In the 70s cryoprecipitate became available and it was only when I came to the USA at the age of 24 that I was able to use factor because prior to that it has not been the FDA has not made it available for people with Von Willebrands Disease
When I was a child I suffered from mostly torrential bloody nose bleeds and when I was about 10 I started to get joint bleeds in my ankles and knees. Eventually my knee ankle had so many bleeds that at the age of 21 I decided to have an ankle joint fusion called an arthrodesis and I have to say it was one of the best things that I ever did for myself
But the biggest obstacle that I have ever had to face Is that in my early years was the fact that in the 60s and 70s and into the 80s the doctors did not believe that women has a bleeding disorder
Today we know that between type 1, two and three there is a possibility that 10% of the people have some form of Von Willebrand’s disease. When I started to menstruate at the age of 11 almost 12 and my first menorrhagia was with my second.period. At the age of 12 they wanted to give me a hysterectomy but thankfully for me the gynecologist was a personal friend of the families and he said there is no way that I am taking the ovaries away from a 12-year-old girl and he Worked with hormones pills and all kinds of treatments to regulate my periods until adulthood
I was not sure even at that age with that I would be able to have children because up,until that point they really had been no documented case of a woman with type III giving birth
Again God smiled on me because I had a obstetrician who had the courage to see me through the pregnancy and they delivered 27 years ago a baby boy and 19 months later a baby girl who are now 27 and 25. At this time my doctor felt that it would probably be better to give me a general anesthetic and the C-section. She felt that a natural birth might cause me to hemorrhage while pushing and at that point she was not going to risk giving me an epidural because she wasn’t sure of the effect it would have on my spinal cord so even though I didn’t see my baby for five hours after he was born I still have a baby boy and then a baby girl in the same way
The biggest obstacle that I have come across as a woman with a bleeding disease particularly when I was younger was that doctors did not believe that a woman could have a bleeding disorder
I would go into the emergency room with ankle bleed and they would want to x-ray it and stick the needle in and try to draw the fluid out and eventually my poor Hematologist had to be called at the crack of dawn to explain to them that” yes I did have a bleeding disorder “and that all I needed was to get some cryo or plasma. When I came to America I was hoping that the attitude towards women with bleeding disorders had changed but to my horror I have found that in my 30 years of my being in this country there is so much ignorance regarding women with bleeding disorders. it has recently been found that women or men in the population one in 10 might have vwd disease and whether it be type one or type two or type III there is a huge amount of people who have this bleeding disorder . However sometimes they don’t know about it until they have a procedure done. In my experience one of the largest group who will not cooperate with the HTC is the gynacologists which is unfortunate because in women with bleeding disorders that is one of the primary issues that we face
They always believe that it’s gynecological the hematologists believe that it is hematological
I once had a massive hematoma on one of my ovaries and my gynecologist said that I needed to go see a gyno/ oncologist because he thought it was cancer and I knew that it was a hematoma my hematologist knew that it was a hematoma. It is just world that we live in today. I’m sure that the gynecologist sent me to an oncologist to cover the liability but if they had listened to my hematologist who at the time had been involved with the hemophiliacs for 40 years then they would’ve spared me the agony of going to an oncologist
Thankfully when I met the oncologist she was very open minded she spoke to my hematologist and she said it’s definitely a hematoma and it was treated as a hematoma
It is the gynecological doctors who will deal the most with menorrhagia and if they were to make contact with the HTC they would understand that this is not something abnormal in a different area but this is as a result of Vwd
Since arrival of Facebook I have been able to participate in many groups a severe Von Willebrand’s group. It is wonderful to have a group that shares ideas and information’s and also a hemophiliac group because some of the issues that we share very similar to the hemophiliacs
The one thing that horrifies me is that since I was 12 which was 42 years ago they has been no change to the attitudes towards women was bleeding disorders, very few young Internists are aware of it and that to me is a very frightening thought . I recently read an article in one of the hemophiliac publications that said if you had Less than 50 % of Factor eight you were more than likely a hemophiliac
I contacted them and said it’s not only hemophiliacs that are lacking factor 8 but Vwd too. So if the publications about bleeding disorders going out don’t even acknowledge that the women have bleeding disorders then what hope do we have to show the rest of the world
My Quest going forward is to be able to get medical student to learn about all types of bleeding disorders especially the ones who go into the ER because they’re the ones who most likely deal with a women with bleeding disorders
Ideally it would be nice to go into the hospitals and talk to the internist residents that are doing kind gynecology/ obstretrics rotations and to be able to give them a live person who has suffered through many problems and convincing people that I have a bleeding disorder
It makes me very sad that when I look at the women that are younger than me but still face this prejudice that they don’t have a bleeding disorder 42 years after I began my journey it just astounds me that the medical profession has not addressed this problem
Over all I must say that I have really been blessed I did not get HIV I did get hepatitis C which lay dormant in me for 25 years and became active around 15 years ago at that point there was a clinical trial for Ribavarin and interferon in which I was able to put to participate . It was 48 weeks of Hell I lost my hair I lost a huge amount of weight I lost my short-term memory which is never come back I lost my ability to sleep and I also lost time you spend with my children ages 11 and 12
That I will never get back . What is the price you would put in a year as a mother?
The psychological effects on all of us over the years and it makes me angry that through the carelessness of people that innocent people had to be infected with these awful diseases the project that was meant to help us save our lives in some case landed up killing us .
Happy to find out if the new Hep C treatment is just a couple of pills and takes just three months I believe.
So in the 15 years medical technology has grown and that’s wonderful
The other greatest development since I was a child is the formation of camps that the kids are allowed to attend. Thanks in part to Paul Newmann with his wonderful Hole in the Wall ‘ camps
When I was a child and my school used to go on the trip with the 7th or 8 graders I was always the child that was left at home because the school didn’t want to take the risk of taking me along
I was the only child excluded So when I see pictures of kids at camps, getting Factor and the runnning off to play and climb and swim it is a beautiful sight
At this time in my life I would like to advocate for the bleeding community and I hope I am able to this
Because as the song goes
I’m Every Woman and I intend to fight for all of them
I have a rare connective tissue disorder also known as Ehlers Danlos Syndrome
As a child I was very flexible and bendy, I was also always in pain mainly my knees and ankles
As I got older, the pain only spread to other joints, doctors and specialists didn’t know why…
I am now 23 and every joint in my body has some kind of pain, I have many bleeding symptoms which includes heavy periods, joint bleeds and muscle bleeds
I have a constant struggle with anemia, I cannot remember what it feels like to not be tired, fatigued or worn down from doctors not taking me seriously
I feel embarrassed to live in a country where our medical system does not help their patients live a quality of life
As humans, we are made unique. Not one of us is the same.. so why are we being treated as tho we are?
Why is it doctors are not looking at each person as a unique case with unique options?
I would like to see a strong education medically for doctors and nurses in the future, I would like us patients to be receiving the treatment we need and to have each person looked at as unique as well as their medical status.. as we ARE UNIQUE!
[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.
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.
I come from a family with bleeding disorders so it did not take me long to be diagnosed with vWD type IIA at Children’s Hospital. Since I was 10, I had been a part of the Bleeding Disorder community having gone to Camp Bold Eagle in Michigan, a part of NHF’s National Leadership Institute, and now currently I am the liaison for the women’s booth at the Glasgow WFH event. I’ve never looked at vWD as a disease, I’ve always looked at it as an opportunity to network and meet people with the same interests as me. I am proud that WFH is globally recognizing women and girls with bleeding disorders.