First, I would like to thank The World Federation of Hemophilia (WFH) and the South African Haemophilia Foundation (SAHF) for nominating me and giving me the opportunity to attend the symposium. The symposium was funded exclusively by Shire Pharmaceuticals.
I attended with Dr. Leriska Haupt, senior lecturer/pathologist, haemotology at The University of The Free State.
This was the first ever symposium on VWD with 16 countries and 32 participants attending, many from developing countries, like South Africa.1 These included healthcare professionals, National Organisation Representatives, patients and care givers.
- Better understand and meet the needs of patients
- Establish a global community of patients with VWD to facilitate support, communication, knowledge and experience exchange and empowerment
- Share knowledge and build global awareness through education
- Establish greater leadership and advocacy among the medical and patient communities and related organisations
- Identify potential countries for conducting VWD outreach and diagnosis
Thursday 30th November 2017
I arrived on Thursday afternoon and had the opportunity to take part in a recording of an educational video discussion hosted by Fiona Robinson, Educational Materials Manager, WFH. I discussed, with another mother from Australia, issues relating to the physical and emotional care of a child with VWD, the hardest part of being a mother and what we wished other parents, children and care givers needed to know.
Friday 1st December 2017
Welcome and Introduction: Antonio Almeida (WHF)
First Session: Clinical management of VWD and women with bleeding disorders
From the presentation, the current challenges worldwide in VWD today are:
- Identifying patients at risk of bleeding
- Better diagnosis and treat GI bleeds
- Monitor VWF concentrates in surgery
- Indications and protocols of prophylaxis
- Identify and treat anti-VWF antibodies
Formal guidelines for the treatment of VWD need to be issued to address these challenges. Women with VWD was then discussed highlighting the difficulties in assessment due to the subjectiveness of bleeding during menorrhagia. Up to 20% of women with objectively documented menorrhagia may have mild VWD (Edlund, 1996). Challenges during pregnancy highlighted the need for the pregnancy to be planned and monitored in known cases of VWD.
Second Session: Patient Experiences and outreach
Presentations from women and men living with VWD and the challenges they face were given. These were personal accounts and the differences from each country were noticeable. Issues involving supply/quality of factor and the cost of treatment was a problem as well as treatment guidelines. This impacted daily on their lives and in some cases prevented them from finishing school due to long periods of absence.
I then gave a presentation (see attached)- “VWD perspective from the developed and developing world- challenges and opportunities”. After outlining the status of the situation in South Africa I then gave my personal story as a mother of 2 sons with Type III VWD. What are the challenges they face in respect of treatment and comprehensive care? What are the opportunities in South Africa for improved diagnosis, treatment, support and education?
Session: Outreach Programs, Empowerment and Opportunities
Presentations on Outreach programs in Sudan, Mexico and Lebanon were discussed. The underlying emphasis was on identifying patients with a risk of bleeding and how to test them efficiently and within the budget of the program/department. In the case of Mexico posters were distributed in public hospitals and patients contacted the Hemophilia Society where they were asked to complete a questionnaire. Loss of motivation of the volunteers was a challenge so 20 of the newly identified patients were each asked to refer a new patient, usually a relative. The need towards national registries was once again stressed. The session was then completed with discussions on how to create awareness about VWD and empowering patients. Dr. Haupt and I discussed the benefits of an outreach campaign targeting women. This could be addressed by pictorial blood assessment charts in feminine hygiene products. Women with a high score could be advised to contact their GP or a given contact number for a Comprehensive Care Clinic.
- Guidelines and protocols for the treatment of VWD
- Targeted training interventions of healthcare professionals
- Greater physician awareness in diagnosing VWD
- Outreach campaigns needed to address underreporting of VWD
- Outreach program targeting women
- Standardised laboratory testing in South Africa
1. USA, Mexico, Honduras, Colombia, France, Italy, Germany, Czech Republic, Hungary, Lebanon, Turkey, Sudan, South Africa, India,