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Submitted by Nisha Suchak on 16 April 2019
A selfie shot of a woman with black hair

Nisha Suchak, 40, who is living with the von Willebrand Disease, which causes heavy menstrual bleeding and other bleeding problems, recounts some of the life threatening situation that she has had to battle.

I have had a bleeding disorder since I was an infant. My knees and elbows would turn black and blue and would pain severely for several days every time I would get a bruise. Once, when I was 3-years-old, I fell on my face while running at home and my nose began to bleed. Most nosebleeds are minor and usually stop within seconds, but my bleeding was excessive, prolonged and hard-to-stop. It was so severe that my hands, legs and my dress were splattered with blood. My mother had to use three large towels to stop the flow. It was then that my parents realised that something was wrong with me.

They took to a nearby hospital, but the doctors there suggested that I should be taken to a bigger hospital. My parents took me to several reputed hospitals, but nobody could provide a name for my problem. It was at KEM government hospital that I was diagnosed with Type 1 von Willebrand Disease (VWD) [blue box below], an inherited bleeding disorder like hemophilia that prevents the blood from clotting. Type 1 is the most common and is usually mild. People with VWD have decreased or defective von Willebrand factor, a protein in the blood that is important for clot formation, hence it takes longer for their blood to clot and bleeding to stop.

VWD is caused by a problem with von Willebrand factor, whereas hemophilia is caused by a problem with another type of clotting factor (factor VIII in hemophilia A; factor IX in hemophilia B). Symptoms of VWD are usually milder than symptoms of hemophilia, but serious bleeding episodes can occur in either condition.

My life is sprinkled with various bleeding episodes, many of them life threatening. I have an ongoing battle with my haemoglobin level. Many times it has come down dangerously to 2-3 g/dL, when the normal range is 12-15. I have been in and out of hospitals innumerable times, to get transfusion of blood. But, thankfully, each time I have survived with god’s grace and will power.

Abnormal Menstruation

There was one serious episode of bleeding when I was a teenager. It was during my menstrual cycle. The bleeding continued for nearly 20-25 days. I had become extremely weak and anaemic. The doctors gave me some medicines, but the flow did not stop. Finally, I was admitted to the hospital. The doctors said that I may not be able not be able to survive for more than a month. I was administered several bags of cryoprecipitate or cryo, containing a number of clotting proteins (factors) to help control bleeding.

It was my periods that troubled me more than, bruises and hurts. While all my friends would finish their cycle in maximum 5 days, I would be bleeding for 12-15 days. This excessive bleeding severely affected my haemoglobin, and I would be required to take blood transfusion frequently.

Pregnancy

But it was during my pregnancy that I had the most harrowing time. Anyway, patients of von Willebrand Disease are known to bleed heavily after surgical procedures. When I had conceived, the doctors suggested that I should terminate my pregnancy. They said that not only will it lead to a lot of complications, but I could jeopardise my own and the baby’s life. However, I was quite determined to have a child, and I said I was willing to take all risks and hardships.

Note: If you are planning a pregnancy, please discuss with your doctor 

In 2007, a week before delivery, I was admitted to the hospital. I remember there were 16 doctors in the operation theatre, closely monitoring all my parameters. After the surgery, the doctors were struggling to stop the bleeding. My haemoglobin had down below normal level and my heart beat was low. I was near unconscious and almost 80 cryo bags were administered.

Finally, after 3 days of delivery, when I became slightly conscious and fit, I could see my son.

Bleeding again

Again in 2018, after being fine all these years, I have been bleeding profusely for a month due to my menstrual cycle. It is terrible. When I go to the toilet, I feel I am bleeding like a tap. The whole bathroom gets stained with my blood. There are large clots everywhere. I land up using at least 6 -7 large packets of sanitary napkins once a month. I prefer to stay at home during those days for fear of staining my clothes or somebody else’s sofa. I just like to be in bed with my feet up.

My advice

I would recommend a multidisciplinary approach to anyone in a similar situation.

  1. Diet – Eat wholesome food, with emphasis on green leafy vegetables to increase hemoglobin. The biggest worry for a person with VWD is low haemoglobin, so all that you put in your mouth should contribute to building iron-rich protein in the blood.
  2. Bleeding – if you have extended menstrual cycles, consult a doctor. There is always a solution.
  3. Alternative Therapies – if there is anything that can help keep your morale or confidence high, embrace it. I am a strong believer of Shivyog teachings with emphasis on meditation and inner healing.
  4. Will Power – You have to build a strong mindset to face the ups and downs in your life.