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Shelley - Six generations of a VWD family

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.

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!

Great-Great-Grandmother AGNES PINEAU (NÉE THIBODEAU) was born circa 1852. She later remarried and became a Downey. Age in photo – 92.

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...

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.

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.

My grandmother RITA BLAQUIÈRE (NÉE GALLANT) was born in Campbellton, New Brunswick, July 5, 1920. She married François Blaquière in October 1943.

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!

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.

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.

SHELLEY MOUNTAIN (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.

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.

My daughter VALERIE ROSE MOUNTAIN born June 26, 2003 on Prince Edward Island. She was diagnosed with Type 1 VWD in October 2005.

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.

- July 2010