Facing VWD during COVID-19 as both a nurse and patient

22.02.2021
Patient stories
Annual Report 2020

Facing the challenge

For Kerri, growing up with VWD was not easy. When she was a teenager her greatest challenge, as it still is, was her heavy ongoing menstrual and breakthrough bleeding.

Read her story below

When Kerri first heard about COVID-19, she did not immediately grasp the severity of the disease or how big an impact it would have on all our daily lives. “Initially, I thought that precautions we take for the flu would be sufficient, but I quickly realised that those would not be enough,” explains the 28-year old nurse at Lucile Packard Children’s Hospital in Palo Alto, California, USA.

Kerri – who was diagnosed with the genetic rare bleeding disorder type 3 von Willebrand disease (VWD) when she was just six months old – remembers that “once businesses, schools, workplaces and events started getting shut down or cancelled, I realised COVID-19 was here to stay and probably for a long time.” She quickly realised the possible implications for patients like herself.

Bleeding disorders do not stop for COVID-19

While so much of the world has stopped for COVID-19, bleeding disorders have not. In fact, the pandemic has just made them much harder to treat. The additional pressure on resources has meant that healthcare systems and workers have often had to focus elsewhere. Supply chains have been disrupted and the need for social distancing has created its own obstacles. Travel restrictions and health risks posed by the virus have also made it more difficult for many patients with bleeding disorders to get the care they need.

These challenges have made it more important than ever that Octapharma continues to produce and supply medicines for the many patients we serve around the world.

“These are unprecedented times. Patients with a lifelong bleeding disorder such as VWD cannot put their treatment on ‘hold’. They rely on their medicines,” explains Kerri, who infuses VWF concentrate, Octapharma’s high-purity, human von Willebrand factor/coagulation factor VIII complex concentrate, once a week to prevent bleeding.

Symptoms of VWD

The symptoms of VWD are:

  • Easy bruising

  • Prolonged bleeding even from minor wounds

  • Frequent or heavy nosebleeds

  • Bleeding from the gums

  • Heavy menstrual bleeding (menorrhagia)

  • Prolonged or excessive bleeding after childbirth surgery, tooth extraction or trauma

Take the test on VWDtest.com

Facing the challenge

VWD is the most common inherited bleeding disorder, affecting about 1% of the population. It is caused by a genetic mutation that results in the absence or defective production of a critical blood-clotting protein, von Willebrand factor (VWF). VWF plays two key roles in the blood: when a bleed starts it immediately binds platelets together to form the start of a clot and it also carries factor VIII (FVIII) around the body. Treatment for VWD needs to correct the dual defect of low FVIII and low/abnormal VWF which can be resolved by intravenous infusions of Octapharma’s human von Willebrand factor/coagulation factor VIII complex concentrate.

For Kerri, growing up with VWD was not easy. When she was a teenager her greatest challenge, as it still is, was her heavy ongoing menstrual and breakthrough bleeding. “This was the hardest thing to initially treat and manage, and also the hardest to talk about and explain to other people,” she remembers vividly.

Patients with type 3 VWD, the most serious form of the disease, can have severe bleeding symptoms, such as frequent nosebleeds. Women often experience heavy menstrual bleeding that lasts longer than average. They are also at particularly high risk of bleeding during pregnancy and childbirth, with some studies showing a ten-fold increase in the maternal mortality rate for mothers with VWD1.

Determined to make an impact

Kerri is fully committed to the bleeding disorder community. Besides her job as a nurse in the antepartum and maternity departments, she is an Octapharma patient educator, working with us to encourage others living with the disease to become their own advocate, to find their voice and to speak up.

“Don’t be afraid to say what you need. There are going to be days where you’re going to feel awful, or you’re going to be moody or angry. Don’t be afraid to say what you’re feeling,” she says.

In more normal times, Kerri would be travelling across the USA to speak at community events hosted by Octapharma, meeting directly with patients. Today, affected by COVID-19 restrictions like the rest of us, her current work location is her living room. “The bleeding disorder community has adapted really well to online events and conferences, and meeting online could be the way we continue to connect even after the pandemic, as it brings people together, no matter their location."

Friendly and easy-going, Kerri continues to manage everything with her characteristic optimism.

This too shall pass

Friendly and easy-going, Kerri continues to manage everything with her characteristic optimism. “I try to keep doing the things that make me happy and keep me sane,” she explains before adding: “Of course, I’ve had my moments of anxiety, fear and despair but I have a great support system – my family, friends and boyfriend – who have all lifted me up.”

More than ever, Kerri knows that if it had not been for her loving parents and sisters, things could have been even harder. As she remembers, “Growing up with sisters – Bridget and Molly – was the best. I always had someone around and feel grateful to have them in my life.

“My grandmother taught me that ‘this too shall pass’, meaning whatever the situation is that’s happening right now, it will end, and you can move on. I’ve thought about that a lot with regards to COVID-19 and I know it will be true. It may take some time, but I’ll be ready when it does.”

Treating VWD

Treatment choice is based on VWD type, the nature and severity of the bleeding, and its site.

  • Desmopressin stimulates the release of stored clotting factors and can be used to treat some type 1 and type 2 patients. However, it is not suitable for all VWD patients.

  • VWF-containing concentrates are used when desmopressin is ineffective or not indicated.

  • Antifibrinolytic medications such as tranexamic acid and aminocaproic acid slow the breakdown of blood clots.

  • Fibrin glue can be used to seal a bleeding site and can be useful after a tooth extraction.

  • For women with menorrhagia, contraception such as an intrauterine device or hormone medication can sometimes reduce menstrual bleeding.

Read more on VWDtest.com
References

1. Kouides 2016. Present day management of inherited bleeding disorders in pregnancy. Expert review of Haematology 9;(10): 987-995

Infographics adapted from

https://vwdtest.com/about-vwd/

https://vwdtest.com/vwd-symptoms-diagnosis/

https://vwdtest.com/vwd-treatments/

Keywords

Annual report

Diseases & therapies

Haematology

von Willebrand disease