Stories from women and girls who bleed too much
Amber and Karine
A Harrowing Experience
by Patricia Stewart
Member of the CHS Program Committee
11-year-old Karine Loiselle went in for a routine tonsillectomy in
North Bay, Ontario in 2005, her life, and that of her mother, Amber
Chevrette, was changed forever. Karine’s surgery lasted twice as long
as usual, and her mother began to worry that something was wrong.
Afterwards, the surgeon explained that there was difficulty with
Karine’s bleeding, and that they should get this checked out. They went
home to Timmins the next day, but nine days later, before they had had
a chance to arrange an appointment for testing, Karine woke up during
the night coughing up blood. They rushed her to Timmins and District
Hospital where she began vomiting blood. Once the bleeding was stopped,
they returned home, but were told to return immediately if it happened
again. Within hours they had to rush back to the hospital where Karine
continued vomiting blood and eventually fainted.
father and I thought we were going to lose our daughter”, said her
mother Amber. “I have never seen someone lose so much blood. The basin
Karine was weak, terrified and confused. It’s a
nine-hour drive from Timmins to the Children’s Hospital of Eastern
Ontario in Ottawa, so their pediatrician, Dr. Willem Verbeek,
immediately had Karine transferred by air ambulance. There, her
bleeding was controlled by surgery and she then underwent testing and
was diagnosed with mild Type 1 von Willebrand disease (VWD).
hindsight, with the information she learned from the CHS Website, Amber
says she now realizes that Karine had all the symptoms of a bleeding
disorder... and so did she. They both bruise easily and suffer from
heavy menstrual bleeding (menorrhagia). Since this incident, Amber is
still undergoing testing for VWD. As a young girl, she suffered from
menorrhagia, but didn’t know it could be caused by a bleeding disorder.
No one spoke about her menstrual periods. Amber also noted that she
sometimes suffered from bleeding following sexual relations. She would
regularly miss two to three days of work each month due to menorrhagia
and eventually had a hysterectomy to solve the problem. Her daughter’s
diagnosis with VWD arrived two days before her own surgery.
now 13 years old, also suffers from menorrhagia, sometimes having two
periods a month, and is undergoing treatment to control it. She has
learned to live with her VWD, and wears a MedicAlert bracelet. Both
Karine and her mother are now registered at the Hemophilia Treatment
Centre in Ottawa. Amber’s two other children, a 3-year-old son and an
11-year-old daughter, will be tested soon so as to avoid having to go
through similar experiences should they have this disorder. Amber sent
out emails to her whole family following Karine’s diagnosis with VWD,
and referred them all to the CHS Website for information. Her mother is
scheduled for testing.
“Reviewing my history and seeing the
symptom list now gives me answers as to why my life experiences were
what they were. I am so glad that we now know what to do and that
Karine will not have to suffer through her “womanhood” like I did,”
writes Amber. “Medication will help her have a normal life, and
education about VWD will enlighten her life experiences.”
wishes to thank the Cochrane District Social Services Administration
Board (CDSSAB) Emergency Medical Services in Timmins, Derrick Cremin
and Jeff Fletcher, and their pediatrician, Dr. Willem Verbeek, for
their quick action in helping her daughter.
by Judy DesBrisay
, British Columbia
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.
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!
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.
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.
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
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.
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.
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.
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.
Karen, on the left, with Dr. 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
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
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.
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
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
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.
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
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
, 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.
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!
name is Sarah Bradshaw. One of the many things I do within the Canadian
Hemophilia Society is to co-author the Youth File column in Hemophilia
Today. I was born with von Willebrand disease, although it wasn't known
until I ran into some problems at the age of twelve. All I knew was
that there was a history of bleeding disorders in my family but not
that I could be affected. I was soon taking many trips to the Hospital
for Sick Children in downtown Toronto for lots of tests I'd never heard
of with dozens of doctors I'd never met. Soon enough everything was
sorted out and I was introduced to the great people within the Toronto
and Central Ontario Region (TCOR) and the CHS.
I went on my
first Hemophilia Ontario Youth (HOY) canoe trip that summer. It was
there that I met some very memorable people I'm sure will be lifelong
friends. For a few years I continued to go on the canoe and winter
trips. Then we started talking about forming an Ontario Youth
Committee. It has all taken off since then. From the formation of one
committee, we have grown to put together a National Youth Committee. We
have all also brought home our learnings to help out with youth
programming in our own areas on our local Boards of Directors.
was moving along amazingly. Then, as Murphy's Law has it, if something
can go wrong… and well, something did. As I grew up in a hockey family,
being diagnosed with von Willebrand disease wasn't going to end my
hockey career after ten years of playing. I had a scholarship and
career ready and waiting for me. The problem was that I had always had
overly flexible and loose joints, though this had never proven to be a
big problem, at least in my mind not a career-ending problem. In
December of 2006, doctors tried to drain my knee, which resulted in the
worst verdict you could hear: “The time has come for surgery.” Not only
minor surgery, but total reconstructive, bone and muscle (i.e. career
ending) surgery. It was a very tough change to adapt to, but one that
would be worth it in the long run.
In April of 2007 I had my
knee surgery. Although I will never be able to play hockey at the level
I did in the past, I will return one day to the rink. I've found more
time now to do things I didn't have the time to do before, especially
with the CHS. I co-chair our National Youth Committee, which I would
never have been able to accomplish if I had continued on my hockey
path. This experience was something that taught me to really believe
that everything does happen for a reason and, no matter how it may
appear at first, something good will always come out of it.
you have the time to get out there and take part in a youth event in
your community, then don't sit and contemplate it, go for it! It's a
great opportunity to meet new people and to try things you may never be
able to do anywhere else. Keep reading the Youth File column in
Hemophilia Today to learn about what else is happening in your area and
be sure to check out our Web site for even more details. If you are
interested in becoming involved at a higher level, or have any
questions, feel free to e-mail any of us and we will do our best to
Six generations of a VWD family
by Shelley Mountain
, Prince Edward Island
You don’t choose your family. They are God's gift to you, as you are to them.
– DESMOND TUTUFrom
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
Great-Great-Grandmother AGNES PINEAU (NÉE THIBODEAU) was born circa 1852. She later remarried and became a Downey. Age in photo – 92.
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...
Great-Grandmother MATHILDA ANN GALLANT (NÉE PINEAU) was born on Prince Edward Island in 1891. She married François Gallant in Atholville, New Brunswick, in 1914.
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
My grandmother RITA BLAQUIÈRE (NÉE GALLANT) was born in Campbellton, New Brunswick, July 5, 1920. She married François Blaquière in October 1943.
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.
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.
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!
My father RICHARD BLAQUIÈRE
was born September 27, 1955 in Campbellton, New Brunswick. He married
ISOBEL (NÉE ARPIN) in September 1974. He was recently diagnosed with
Type 1 VWD in addition to having characteristics of Type 2M.
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.
(NÉE BLAQUIÈRE) was born on February 8, 1975 in Campbellton, New
Brunswick. She married Marc Mountain in July 2000 on PEI. Diagnosed
with Type 1 severe VWD in February 1994, she recently learned that she
also has characteristics of Type 2M VWD.
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.
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.
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.
My daughter VALERIE ROSE MOUNTAIN born June 26, 2003 on Prince Edward Island. She was diagnosed with Type 1 VWD in October 2005.
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.