Fatal Pulmonary Embolism Precipitated by Diane 35

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This story is about our daughter Marit McKenzie, who was taking the birth control pill Diane 35 when she died suddenly from a pulmonary embolism on January 28, 2013.

Marit had been having some issues with mild acne. At age 16 her doctor had put her on minocycline, an antibiotic, to treat her acne, but it did not work. Then she was put on Accutane for six months, which she found very drying to her skin and caused severe burning of her eyes. At this point, her sister had been on Diane 35 for about a year, after having been through the various treatments as well. Marit asked her doctor if she could try Diane 35 too, so that she could have clear skin for her graduation in June 2012.

Marit started taking Diane 35 in February 2012. Her skin cleared up and she celebrated her high school graduation.  She continued on Diane 35 into the fall of 2012. Marit started university and was extremely anxious and nervous about going. I didn’t clue into the little changes as she was always very shy girl and was nervous at the beginning of every school year. But looking back on it, her level of anxiety was unusual.

In October 2012, she fell off her bike and pulled a muscle (we thought) but the symptoms disappeared. She also had some pelvic pain after lifting some heavy tires. She went to the doctor to have these issues looked at and the doctor renewed her prescription for Diane 35. To investigate the pelvic pain, she had an ultrasound on her abdomen, and the results of that were normal.

The pains went away and from November to January, Marit seemed relatively normal. We enjoyed Christmas in the mountains and did some cross-country skiing. Marit was faster and better at it than her older sister and me. Through to mid-January she was healthy, but around the 15th of January she started to feel very tired. I took her to the doctor, who said she seemed fine but would check her blood for mononucleosis. The results came back negative.

The following week on January 23rd I took her back to the doctor because her heart was now racing. The doctor said it was fast, but not too fast, and also said that Marit might have hyperthyroidism. So she was sent for tests again: more blood work and an ECG. The lab said they would call me if results were unusual. They did not call.

Marit stayed home from school on Thursday the 24th, trying to rest. Friday morning she drove over to her boyfriend’s and they visited, just sitting on the couch. Too tired to do anything, she came home. I wanted to take her to the hospital, but she just wanted to wait for the results of her tests. She was very afraid of hospitals. We spent the evening watching TV together. She went to bed around 10:30 pm. My husband and I went to bed at the same time.

At 12:30 am that night Marit used her cell phone to call us. She couldn’t fall asleep as her heart was racing again. We took her to emergency. We no sooner got there when she went into cardiac arrest. EMS revived her four times. They did chest x-rays and found a massive bilateral pulmonary embolism. Over the next two days they did everything they could but there was too much brain damage from the heart attacks. Marit died on Jan 28, 2013.

When the doctors told us what caused this to happen we immediately took our older daughter Britta off Diane 35. Our doctor tested Britta, my husband and I for blood clotting disorders. Marit was never tested, but Britta’s tests showed that she might have protein S deficiency, which is associated with an increased risk of venous thrombosis. However, my husband and I do not have any signs of a blood clotting disorder.

Marit was an absolute joy and so intelligent, kind, compassionate and loving. Her best friend Paige had a liver transplant when she was a few months old and because of that and her love for Paige she did her senior project in high school about raising money for the David Foster Foundation. This foundation is a non-profit charitable organization dedicated to providing financial support for non-medical expenses to Canadian families with children in need of life-saving organ transplants.

Marit was also a fine artist and she did a variety of artwork and photography to sell in order to raise money for the David Foster Foundation and to support organ transplantation. She believed in organ donation because she would not have had her amazing friendship without someone having donated their baby’s liver to Paige. Marit asked me to sign her donor card when she was 17! We could never have predicted that a year later we would be donating her organs.

Our hearts are broken; I don’t want another family to go through this senseless tragedy. Why can we not test our young women for blood clotting disorders before they go on birth control? Our doctor did not know how dangerous this drug is, and that 13 other young women in Canada have died from it, not to mention the many others left with disabilities.

I am hoping get the medication Diane 35 banned in Canada, as it is 4 times more dangerous than regular birth control pills. It is prescribed for acne, but does not cure it. It is only supposed to be used for a few months, and when you come off of it the acne usually comes back. The risks of taking this medication do outweigh the benefits in my opinion, certainly considering acne is not life threatening. Please click here to sign and share my petition if you are in Canada.

Real Risk Study: Birth Control and Blood Clots

Lucine Health Sciences and Hormones Matter are conducting research to investigate the relationship between hormonal birth control and blood clots. If you or a loved one have suffered from a blood clot while using hormonal birth control, please consider participating. We are also looking for participants who have been using hormonal birth control for at least one year and have NOT had a blood clot, as well as women who have NEVER used hormonal birth control. For more information or to participate, click here.

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