Stories from women and girls who bleed too much

“Eureka!”
by Judy DesBrisay, British Columbia

The clinic hematologist listened attentively and replied concisely as the static-ridden radio telephone communication reverberated between Eureka, Nunavut, and Vancouver, British Columbia. “Yes, infuse the fresh frozen plasma (FFP) when you reach Resolute,” re-affirming my planned management of a persistent right knee bleed that occurred at a remote research camp on Ellesmere Island.

A helicopter ride over Canada’s immense High Arctic landscape had “ferried” me from the camp to Eureka. On Ellesmere Island, Eureka is the second most northerly permanently inhabited settlement on earth, a major Canadian weather station and settlement used mainly by Environment Canada and associated universities. Weather permitting, the bi-weekly “tundrasched”, a Twin Otter aircraft, would take me to Qausuittuq (place with no dawn), sometimes called Resolute Bay: a small Inuit hamlet on Cornwallis Island, Nunavut. There, I had an emergency cache of FFP in an industrial deep freezer. The challenges and logistics of ordering and transporting two units of FFP for possible use during my tour of duty as camp cook/nurse had been worthwhile!

At Resolute, I infused my “product”, continued “R.I.C.E.” [rest, ice, compression and elevation steps for first aid] and toured the Arctic outpost and Inuit settlement as I awaited flights to Yellowknife, NWT and Vancouver, B.C. Home-based physiotherapy replaced painkillers in managing this 1990 bleeding episode. At the close of my temporary leave of absence, I returned to my duties as a Vancouver-based community nurse, dividing my duties between a project with Persons With AIDS and a multidisciplinary team whose task was to facilitate the integration of students with severe disabilities into the public school system.

The Vancouver (Arthritis Centre) Hemophilia Clinic staff (especially Dr. G and nurse L) encouraged me to maintain my active lifestyle while respecting the influences of my rare factor V deficiency. Diagnosed at age 17 due to the investigation of my sister’s frequent serious bleeds, I was relieved to understand the cause of our hemorrhaging histories. I continued to be active at school, at work, and at play.

Pre-diagnosis, my “moderate” hemophilia resulted in signs and symptoms ranging from severe childhood nosebleeds to extended post-operative bleeds (that required “direct” person-to-person transfusions, in 1943 and 1947). Menses and childbirth posed many problems, in an era with limited management options. My worried hematologist and obstetrician guided me through three pregnancies and deliveries in the early 1960s. I have two amazing, married adult children and four astounding grandchildren. A hysterectomy at age 40 was well planned and managed; it freed me from multiple concerns. Following a 1992 severe motor vehicle accident I was unable to communicate with paramedic and emergency room personnel. Reference to my Medic Alert bracelet led to prompt collaboration with the clinic hematologist for the necessary management of my head injury and other trauma. My ongoing, assorted bleeding episodes are managed with and without the use of FFP. I now collaborate, as needed, with the St. Paul’s Hospital Adult Hemophilia Clinic in order to optimize my health.

As a 71-year-old woman with a factor V deficiency, I face new challenges. I now balance the benefits and risks inherent in management of my coronary artery disease. In April 2009 I participated in the CHS Calgary conference, Women with Bleeding Disorders: Life Stages. We’re moving forward in the diagnosis and management of hemophilia and in communicating our increased understanding with others.

I have travelled a long route vis-à-vis my understanding of and life with hemophilia. I completed my formal education and continued to explore the evolving world. I have worked in urban and rural communities. As an “Outpost Nurse” in the Nisga’a village of Gingolx, B.C., I diagnosed and treated clients on site and, when necessary, collaborated by radiotelephone with distant physicians and arranged the evacuation of severely ill persons by sea or air. The Nisga’a were patient, good humoured and accepting as I adapted to my expanded nursing responsibilities. Later outpost duties in the Chilcotin introduced me to the far-ranging Carrier/Sekani peoples and their ranching neighbours. As I traversed this region to visit far-flung homes I developed “off road” 4x4 driving skills. One morning a visiting client was startled when I answered the clinic door with my own intravenous pole in tow. The plasma dripped merrily while I assisted with her problems and bid her farewell. The Red Cross Outpost Hospital in Edgewood, B.C., enhanced my appreciation of the breadth of human capacity and the lessons to be learned in a nursing role that included collaboration with local residents, distant physicians and other healthcare consultants. My travels have taught me much. I am drawn ever northward: travelling to Nunavut in 1988 and 1990. In 2006, my Arctic exploration included Nunavut and Greenland. My husband Michael and I lived, worked and travelled extensively in South America from 1997 to 2000, including a trip to Antarctica.

Thereafter, we returned to Taharti, our wilderness home in central British We are nestled amid forest and meadow: an hour’s drive away from our nearest neighbour and totally “off grid”. The solar panels and windmill produce our power. We chop our wood and pump our water. Columbia. We are nestled amid forest and meadow: an hour’s drive away from our nearest neighbour and totally “off grid”. The solar panels and windmill produce our power. We chop our wood and pump our water. We hike, cross-country ski, swim, kayak, garden, maintain our log home and the rough access roads. Wildlife viewing, weather watching and star gazing fill our leisure moments. Mike makes music and I make art (my paintings are exhibited in solo and group exhibits in Canada and Chile). We have extensive first aid kits for our home and vehicles and a well-informed healthcare team in town, two hours’ backroad travel from Taharti.


Understanding my factor V deficiency has helped me to expand rather than limit my life. Satellite technology allows me to live in the midst of a remote paradise, collaborating as necessary with a range of resource persons, much as I did at Eureka two decades ago.

Survival and triumph
by Karen Fahey, Laval, Quebec

My name is Karen Fahey and I have an inherited disorder known as factor VII deficiency.

At the age of 14, life as I knew it changed forever. I began to menstruate… and that’s when my nightmare began as well.

The main cause of my nightmare was heavy and prolonged periods, also called menorrhagia. I want to tell my story and to share with you some of my experiences with menorrhagia and the impact it has had on my life.

At first, I wasn’t sure if what was happening to me was normal, because I always bled very heavily when I menstruated and often experienced embarrassing little incidents. Others thought I was making a mountain out of a molehill, that I just had to be more careful to prevent such accidents! For example, when I was 16, a classmate touched me gently on the shoulder as I was getting out of the school bus to let me know I had stained my white pants. I think “traumatized” is the right word to describe how I felt when I had to go to the infirmary with my bloody stain in plain view for all to see.

At age 18, as I was getting out of the car of the young man I was dating, I noticed a bloody stain on the beige vinyl seat... I cried with shame for a long time.

Over the years, the bleeding increased, and fatigue and anemia became a part of my life. I began to have difficulty at work and at home. Yet still people felt I was overreacting. Because of my insecurity, I would often work late to make up for the time I spent going back and forth between my office and the washroom. Not to mention my fatigue and my lack of energy. I was afraid of losing my job.

As I neared my 35th birthday, I just couldn’t take it any more. I was not happy with myself. I was always tired, nervous, difficult to approach. By that time, my husband and my two daughters were directly affected by my mood. I had consulted many different doctors over the years who prescribed iron, saying I was too young for a hysterectomy, that I should wait a little longer before making such a momentous decision.

I continued, as a result, to live as I had in the past. One day, my family doctor thought she had found a solution for me. She prescribed Depo-Provera, a hormone injection administered once every three months. I went faithfully to my appointments every three months for four years, and my life was transformed. My joy was short-lived, however. In 2004, a report was issued about the risks of this drug, and my doctor stopped prescribing it for me. Instead, she referred me for a consultation in hematology at Sainte-Justine Hospital, and I met Dr. Rochelle Winikoff.


Dr. Winikoff understood me immediately, and she sent me to a gynecologist, Dr. Diane Francoeur, who also completely understood what I was going through. Dr. Francoeur and Dr. Winikoff worked as a team, putting their heads together to find a solution for me. We talked about the possibility of a hysterectomy. Considering my bleeding disorder, surgery of this sort was risky. We opted instead for Mirena (an intrauterine device [IUD] that contains a low dose of Depo-Provera), to buy time for advances to be made in medicine and technology. A hysterectomy could be reconsidered in a couple of years.

Unfortunately, for some unknown reason, the IUD pierced my uterus. There was no longer any choice. I had to have a hysterectomy. Dr. Winikoff was directly involved, and once again her close collaboration with Dr. Francoeur was remarkable. Together they restored my confidence, assured me that they would take every precaution to ensure the success of the surgery. Still... I was very frightened.

The operation took place in May 2006. The bleeding was kept under control throughout the entire surgical procedure, and I returned home barely a week later. Not long after, I noticed drops of blood on my towel after a shower. Worried, I went to the hospital. Unfortunately, neither Dr. Winikoff nor Dr. Francoeur was present. I saw the doctor on duty, who had no knowledge of my case. He did the best he could and sent me home. Exhausted, I went to bed at 6 in the evening, only to awaken suddenly at 11 p.m. covered in blood. The entire family took off in a panic for the emergency room. Once again, neither Dr. Winikoff nor Dr. Francoeur was there. I tried to explain my situation but found myself surrounded by nurses and doctors who knew nothing of my case and could not give me optimal care. By the following morning, I had lost a great deal of blood and emergency surgery was required. I spent several days in intensive care and received 13 transfusions of blood products. A three-week hospital stay turned into three months. I worked very hard to get back on my feet. I confronted my fears, and little by little, my energy returned.

After all this pain, all these fears, anxieties and frustration, here I am at age 45 finally wearing white pants without any fear. The road to this place was marked by obstacles and disappointments, but I know that, with the support of a multidisciplinary team of medical experts and a network like that offered by the Canadian Hemophilia Society, solutions are possible.

I was ecstatic to learn of the creation of a national CHS program devoted exclusively to bleeding disorders in women. And I am delighted to be part of the coderouge advisory group that will champion the resources required to ensure no woman will ever have to go through what I did.

Kristy Dobson is an 18-year-old competitive figure skater and York University student in Toronto. She also has von Willebrand disease. She shares her story about how the bleeding disorder has affected her life.




How a bleeding disorder has affected my life
by Kristy Dobson, Pickering, ON

Von Willebrand disease has had a big impact on my life. At a fairly young age, I found out that I had a bleeding disorder. It not only resulted in a major lifestyle change, but it also made it necessary for me to learn about the challenges that I would have ahead of me and I asked myself, “How am I going to deal with this?”

I am 18 years old and a competitive figure skater representing Canada. My bleeding disorder affects me every single day of my life. I train about 25 hours per week (15 on the ice and 10 off) and one day hope to represent Canada at the Olympic Winter Games. Once my skating career is done, I have aspirations to research better training methods for Canada’s athletes.

Competing in a sport at an elite level requires many hours of training and daily physical stress to the body, resulting in numerous injuries for someone with a bleeding disorder. For a person without a bleeding disorder, injuries such as a sprain or minor impact injury can heal within a week or so and they do not have to be concerned about what is going on inside their body. But for someone like me, a simple sprain can take weeks to months to fully recover and I always have to be concerned with what is happening inside.

Questions like: Could I be bleeding into the joint? Will I need a blood transfusion for blood loss? Do I need to inject myself with DDAVP? Do I need blood products? Should I go to the hospital now or should I wait and see how it goes? These decisions were all previously made by my parents and coaches, but now that I am an adult, I must make those decisions for myself. However, if I have a bleed from a head injury or something of the same severity, I am not in a position to make such decisions, so key people in my life have to be informed as to what to do in those circumstances.

For example, about two years ago I had an injury that could have ended my skating career. It started with a simple sprain to my ankle but within a very short period of time, I had bled severely into my joint. By the time I got to Sick Kids Hospital in Toronto and the decision was made to inject me with DDAVP, infection was setting in. The infection in the blood was very severe and the decision to operate and irrigate the joint had to be made. An operation would get rid of the excess blood and infection, but there was a risk of damage to the tendons. After weeks in the hospital and several IV blood meds, morphine and antibiotics, the infection finally started to respond and they did not need to operate. Months of rehab and medications, along with my great determination, got me back on the ice.

On a day-to-day basis, major problems can arise from the simplest of events. For example, just by bending my arm I can injure blood vessels or tissues and cause major internal bleeds. I have to be aware of any swelling or hot spots around joints and take any bruising very seriously, especially if it is unexplained. Minor cuts and scrapes to people may be minimal, but I almost always end up in the hospital getting stitches.

On a day-to-day basis, I must make sure that I have supplies of DDAVP at home and at the arena in case I injure myself. Since DDAVP must be stored at a certain temperature and in a fridge, I cannot carry it on my person so I must make sure that I can access it when needed. Wherever I go, I must have a plan for getting the DDAVP quickly. I have been taught by the Hemophilia Clinic at Sick Kids how to inject myself and I have taught my parents, skating coaches and other key people who will be able to help me in an emergency situation. It can be a tough call as to whether I need DDAVP or a hospital assessment first.

Along with a bleeding disorder, I have Ehlers Danlos Syndrome. Ehlers Danlos prevents my tissues from connecting properly. This also results in bleeds and severe bruising, as well as tendonitis because it also makes my body so flexible, and that causes rips in the tendons and therefore considerable bleeding.

I have had numerous injuries and daily occurrences that have always led me to the hospital for treatment, but I have learned to cope with and overcome my bleeding disorder.

by JoAnn Craig, Prince Edward Island

When my husband Colin, who has hemophilia, and I decided to start a family, we both breathed a sigh of relief upon the birth of our first daughter and then, when the second girl was born, we figured we were free and clear of any bleeding issues except for dear ol’ Dad. This was not to be. Three months later we were wearily plodding through a day of colic with Olivia, or so we thought. I figured a warm bath would help, only to discover an egg-sized bruise on the back of Olivia’s hand. As soon as Colin saw her hand, he deflated as if sticking a pin in a balloon. “That’s a bleed. She’s got hemophilia.”

Upon our arrival at our local hospital in Charlottetown we were met with scratching of heads and puzzled faces, but also with co-operation. The wheels were immediately set in motion, and top-notch quality care for our baby was well under way with an official diagnosis and treatment. At the outset, Olivia had to endure being pinned down long enough to infuse her (which on occasion led to a bleed) and very soon learned what was coming once she was laid down in this hospital room. This only lasted until she was 9 months old, when the decision was made to implant a Port-a-Cath. It was all overwhelming enough to even a battle-hardened veteran like her father, but to have to pass your baby along to waiting surgeons was heart-wrenching. As it turned out, it was the best decision we ever made! Home infusion eased the load for both Olivia and her parents with twice weekly infusions with which she is now old enough to assist.

Along our journey of raising a girl with severe hemophilia, we have met some wonderful people involved in the cause: those involved in medicine by choice, and those of us who are becoming professionals by being thrown into it head first! We are grateful for our GP, pediatricians, hematologists and their teams, and for a special lady in Medical Genetics at the IWK in Halifax, N.S., who has taken on the phenomenon that is the Craig family and has lovingly coined it “Finding Nemo”. This, of course, refers to her research determining not only how a girl inherited severe hemophilia, but how she inherited it from her father, who in turn inherited it from his mother! True Story! Nisa has met with us on every hospital visit and somehow manages to explain her progress thus far in our genetic make-up, (thanks to contributions made by family members) going back to our distant relatives, telling us why we are the way we are... well, scientifically speaking anyway!! We all anxiously await her results, perhaps finding a way to unshackle the ball and chain that cause pain to so many, and weigh us down both emotionally and physically.

Olivia is otherwise a typical 4-year old who is unrelenting in chasing her big sister Alexis, who is a huge part of our support team. She enjoys Barbies, swimming, the beach and playing outside. She has no problem finding a friend to play a game HER way, as that toothless grin wins you over every time! She gets a kick out of telling anyone who asks how she lost her two front teeth. “It’s Daddy’s fault. He put me in a box!” Hmmm? She feels no need to explain that when she had a bleed Colin put her in a big box to play quietly in (we all know children like to play with a box more than a toy) and was smiling when the box tipped over. Colin just smiles, shakes his head slowly, looks skyward and knows that payback for his own childhood shenanigans is going to come full-circle!

Six generations of a VWD family
by Shelley Mountain, Prince Edward Island


From one generation to the next, our family’s wedding pictures portray the love and support that those of us with von Willebrand disease (VWD) have had over the years. Through each generation there was someone at our side who loved and cared for us even though life at times was a life and death situation. They continue to be the rock that holds this family together!



Agnes was known to family members as a “bleeder” long before VWD was discovered in 1925. Her brothers and sisters were “bleeders” as well. They knew they had a condition but only thought of themselves as heavy bleeders. Although it was rare back then for the general population to have a doctor, Agnes’ husband was a politician and could afford one. For childbirth, the doctor would give her medicine in a bottle for her bleeding. What this medicine was, no one can say...






Her mother was a “bleeder” and Mathilda knew from her very heavy periods that she herself was one too (so were one of her two sisters and one of her three brothers). Mathilda had several miscarriages but gave birth to eight children – four were considered “bleeders”. As children, the “bleeders” had to be hospitalized for tooth extractions; the doctor would tell the nurse to “pack those gums tightly” to prevent bleeding. Contrary to many, Mathilda was open to talking about her children’s bleeding issues.






Rita grew up knowing she was a “bleeder”. Bruises and nosebleeds were a normal part of her childhood. Her menstrual periods started at age 14 and sometimes she would bleed twice a month. She recalls her mother telling her she bled the same as she did. Rita also had a few miscarriages. Her doctor told her that for childbirth, she must always go to the hospital. Rita gave birth to 11 children and hemorrhaged almost every time – with three deliveries she went into shock from loss of blood. Each delivery was a life or death situation but she remembers she wasn’t scared and always thought it would stop. Four of her eleven children have VWD.

In 1982 she was admitted to the Moncton Hospital with intestinal bleeding and treated with cryoprecipitate for two weeks until her bleeding finally subsided. Rita remembers that at the time, people had died from HIV due to tainted blood products.

In 1992 she had a bowel bleed. Test after test at her local hospital could not pinpoint the cause of the bleeding. Doctors determined that there was no time to send her to Moncton for further tests and they would need to do whatever it took to stop the bleeding. During surgery they found the bleeding intestinal vein and she made a full recovery.

Since then, Rita has been diagnosed with VWD. She now has a name for her disorder after calling herself a “bleeder” for most of her life. On her doctor’s advice, she has been taking iron pills for her anemia and has never felt better. Her ever-positive outlook and love of life has been an inspiration to us all.

Happy 90th birthday!






Richard remembers his childhood as being relatively normal with minimal bleeding. His mother told him to never give blood because he was a “bleeder” and he didn’t have enough to give! He remembers bleeding longer when cut, and having to go to the hospital to have a tooth extracted. Men usually don’t present as many symptoms as women so in turn he didn’t speak about it often to his two children, my brother Raymond and myself. We both have VWD.






My brother and I had childhood nosebleeds. We would sit outside with a 4-litre ice cream bucket, heads tilted back to try to stop the bleeding. On my 8th birthday, I thought I had the flu until I threw up blood all over my blanket. I had a bleeding ulcer.

The worst of it started when I got my periods – 10 days, 11 days, 13 days long. I hated those years that affected my self-confidence. Finally some relief came when I was able to start taking “the Pill”.

At 18, I became pregnant. Sixteen weeks into pregnancy I began bleeding heavily. It was a threatened miscarriage but I was determined to keep my baby. It was then that a hematologist recognized some symptoms by asking the right questions and checking our family history. Through a timing test and blood work we had an answer – von Willebrand disease. Months later I delivered a beautiful healthy baby girl. Three months later I was still bleeding. They gave me DDAVP and I had to stop breast feeding immediately. A few days later the bleeding stopped.

Nine years later I became pregnant with my second child. This time, with further testing, we put an action plan together. I delivered another beautiful healthy baby girl. Three years later when my periods were still heavy and out of control, the doctors and I decided the best way to deal with this was a hysterectomy. Five days out of the hospital after my surgery, I began hemorrhaging internally. For three days the bleeding could not be controlled and I was given blood transfusions. Watching someone else’s blood being used to save me was the scariest feeling in the world. I realized I may not make it out alive. Not having a chance to say goodbyes to my family was devastating. They sent me for emergency surgery on a Friday night at 11:00 p.m. I recovered. The saying “You don’t know what you have until you lose it” means so much more to me now. Things can deteriorate so quickly.

Recently I developed a bleeding cyst on one of my ovaries and ended up in hospital three times on morphine. Because we do not have a hemophilia treatment centre to handle such cases in my province, I was sent to a hospital in another province. Treatment is now underway.

I am very fortunate to have the Canadian Hemophilia Society in my life for the support and the information they have provided me.






Valerie was only a baby when she cut her palm between her finger and thumb. It took a long time to stop bleeding. Call it mother’s intuition, but I knew I had to test her for VWD; which turned out to be positive. Then in 2006, Valerie fell and damaged her two front teeth. She was taken to the IWK in Halifax for surgery to have them extracted. Because precautions were taken in advance, with appropriate treatment there was very minimal bleeding. Since then, she has had a relatively normal life aside from frequent bruises on her legs. Life holds much more promise for her than what was experienced by the previous generations of family members living with VWD.

My hope for the future is that no one with VWD goes undiagnosed; that medicine keeps evolving so we don’t have the uncertainty of whether or not we are going to stop bleeding. And, that a cure will be found for all inherited bleeding disorders.