Health AreasNon-communicable Diseases

Giving hope to women with bleeding disorders

Ma-shiro. Visit from Aunty Flo. Period. Mgeni. The red robot.

We have catchy words to refer to menstruation and it should be natural as breathing. However, one woman is breaking the barriers and bringing the menstruation discussion to the table where women can talk about their bleeding challenges.

When Molline Odwar got her first monthly period about two decades ago, it was a sign that she was growing up. She looked forward to the defining moment with pride and confidence. However, it brought pain and agony. Molline has Von Willebrand Disease which means she has heavy and prolonged periods that can last as long as a week, or more. Today, she is no longer squeamish about blood and takes every opportunity to create awareness on a bleeding disorder that is rarely spoken about in family and social circles. Over the years, she has gained the strength, courage and confidence to talk about her monthly periods.

“Because my periods are longer, it leads to fatigue and nausea due to loss of iron. It is also psychologically demanding to have menses with clots and it further burdens me to manage it longer than normal,” Molline said. Her search for answers on how to manage her condition has led her beyond the borders because she is optimistic that this is the last key in the bunch that opens the lock.

While researching online about on Von Willebrand Disease, she met Laurie Kelley who runs an educational forum for individuals and families dealing with Haemophilia, another bleeding disorder related to VWD. Through raising her three children, one of whom has haemophilia, Laurie has authored 11 books on Haemophilia and co-authored another on Von Willebrand Disease.

“When I met Laurie, I realized that VWD is manageable. I sowed a seed in my heart to stay strong and increase awareness on this bleeding condition,” Molline said adding that through her short stay in the US, she learnt the importance of creating a support group to increase awareness on Von Willebrand Disease. Her father and brother also have the condition and she is the champion helping them to deal with it. She is sad that her grandmother who had recurrent bleeding episodes did not have the privilege of having a diagnosis and proper management.

What is Von Willebrand Disease?

Haematologist Kibet Shikuku describes Von Willebrand Disease caused by a missing or defective clotting protein known as the von Willebrand factor (vWF). “When a blood vessel is injured and bleeding occurs, VWF helps cells in the blood, called platelets, mesh together and form a clot to stop the bleeding. However, in people with VWD, it takes longer for blood to clot and for bleeding to stop,” said Dr Kibet who is also a lecturer at the department of pathology at the University of Nairobi. Dr Kibet further notes that VWD runs in families and it is more common in women and the symptoms are more apparent in women due to menstruation and childbirth. According to Dr Kibet, pregnant women with VWD need close monitoring by a multisectoral team that should involve obstetricians/gynaecologists and blood specialists.

VWD is named after Finnish physician Dr. Erik von Willebrand, who first described the condition in 1926. He described a five year old girl whose 10 other siblings had bleeding disorders and her parents reported frequent nosebleeds. Sadly at 13 years, this girl bled to death during her fourth menstrual period.

It is also known as angiohemophilia and science has shown that it mostly affects people with blood group O. The Willebrand factor is a glue-like protein that helps blood cells stick together (clot) when you bleed. It affects men and women equally and lacks symptoms in girls in some cases, until their first monthly periods. It has no cure. Some of the most common symptoms associated with this condition include;

  • Heavy menstrual periods more than 7 days
  • Passage of clots during periods
  • Frequent nosebleeds
  • Bleeding gums
  • Easy bruising
  • Excessive bleeding after tooth extractions and surgery.
  • Prolonged bleeding after birth in women
  • Irregular uterine bleeding
  • Can lead to anaemia

Due to VWD complications, Molline delivered her baby boy at the seventh month of pregnancy but she is happy that it was managed by specialist doctors who monitored her closely. “Today, my son Gerson Kibali is testament that women with VWD can have a successful pregnancy,” said Molline whose son’s second name means ‘God’s favour,” “I look at my son and this is a constant reminder that I am blessed,” says Molline.

Dr Kibet emphasizes the importance of specialised care during and after pregnancy. “A delivery plan should be drawn up jointly between the managing obstetrician, paediatrician, and their associated blood specialists and agreed with the patient to ensure the patient does not bleed out, “added Dr Kibet. The child can also be checked whether they have VWD. In Molline’s case, the assessment did not find VWD. She smiled.

The World Federation of Haemophilia, WFH, notes that women with Type 3 VWD seem to have more frequent miscarriages, especially in the first trimester of pregnancy. “It is possible that these miscarriages are simply more noticeable in women with VWD, because there is more bleeding. Bleeding after miscarriage can also be more severe for women with VWD,” reads excerpts from the WFH information portal.

How does VWD manifest in men?

In men, the bleeds can manifest as nosebleeds or swellings under the skin when an injury takes place. Men who get anaemia due to the low levels of iron in the blood from bleeding episodes and women who experience excessive menstrual bleeding may need to take iron supplements. Other procedures that should also be jointly managed for persons with VWD include tooth extractions and surgeries. Molline adds that she is also keen on her diet to ensure that she gets her daily recommended iron intake from her diet.

“Iron is an essential nutrient especially for persons with VWD. I take my fair portion of fruits, red meats, legumes, grains and vegetables in every meal so that I do not miss out on this critical nutrient, “ Molline added.

Her journey to a diagnosis was by sheer luck and coincidence. “When my brother was admitted at Kenyatta National Hospital receiving a transfusion after a bleeding episode, I began bleeding and this prompted a more detailed test for me and other family members. It established that we have VWD and hence learned how to prevent and manage bleeds,” said Molline. If we had this kind of tests, my grandmother would have understood that she had a bleeding condition.

How common is this bleeding disorder?

Whereas it is estimated that up to 1% of the world’s population suffers from VWD, Dr Kibet estimates that the number of people in Kenya with VWD is unknown due to lack of awareness on its common symptoms and also the lack of a central repository and specialised centres to effectively manage it. The treatment involve giving clotting factor concentrates to prevent bleeding and bleeding-related complications in people with VWD. One of the major concerns that Molline raises is the lack of readily available VWD factor concentrate in Kenya. So far, this can be competently handled in four regional health facilities in Kenya; Kenyatta National Hospital, Moi Teaching and Referral Hospital. Coast General Hospital and Murang’a Level 5 hospital. The Kenya Haemophilia Association is tasked with creating awareness on bleeding disorders like Haemophilia and VWD.

Dr Kibet notes that it can be passed down through the genes from a parent to a child of either sex however in some cases, a spontaneous change in the VWD gene before the baby is born can cause this condition. A woman or man with VWD has a one in two chance of passing the disease to her child.

What treatment is available? “Treatment involves giving drugs known as VWD replacement factor concentrates that control bleeding in severe cases,’ said Dr Kibet adding that each case is handled on its own to allow a proper analysis of how the condition presents.

Molline is on a roll of energy to ensure that the factor concentrates are readily available in Kenya. This is her new-found way to fight the VWD challenges. She is optimistic that she will win because courage is not limited to the battlefield. Molline is optimistic that in coming years, there will be more awareness on haemophilia that will improve the diagnosis, treatment and management of this rare disease. The Jose Memorial Haemophilia Society-Kenya aims to educate, create awareness, provide treatment and support research on haemophilia and other bleeding diseases. They also provide factor concentrate to persons with haemophilia to prevent and manage bleeding.

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