This video was recorded for the 10th anniversary of hae day :-)
Tell us a little about yourself
My name is Fiona Wardman, and I live in Sydney, Australia.
I have HAE and am the only one in my family with HAE. After many years of unexplained swelling attacks, including one laryngeal attack that almost killed me, I finally received a diagnosis 26 years after my first attack.
I became involved with the HAE community when my Immunologist invited me to meet with other patients and physicians to discuss gaining access to funded treatments. With the help of HAEi, I co-founded HAE Australia, now known as HAE Australasia, and our organization represents Australians and New Zealanders with HAE.
In 2014 I was elected as a Director and the Treasurer of HAEi. In 2018 I was asked to join the Regional Patient Advocate (RPA) program for the Asia Pacific region. Towards the end of 2018, HAEi Leadership asked me to be the Chief Regional Patient Advocate to oversee the RPA program, which now covers the globe.
Tell us a little about your region
The Asia Pacific region is incredibly diverse in culture, landscape, languages, and population numbers. Regarding HAE, we have varying degrees of knowledge of the disease and treatment options. The region has long-established member organizations, and some groups are young. One common thing amongst the countries is the passion and commitment to quicker diagnosis times, supporting patients, and gaining access to funded treatment options. While all these things can be challenging, there are constant strives forward through the dedication these HAE champions have in each country.
- Region: Asia Pacific
- Number of countries: 16
- Number of member organizations: 13
What are you most proud of being able to do for the countries in your region?
I am very proud that my region has made significant progress in a short time, despite some barriers to overcome in some countries, like the variety of languages.
Since taking on the role of RPA for Asia Pacific, I have helped people with HAE who have felt or been alone connect with me, with HAEi, and with others in their own countries and across countries. It can be difficult for people in some countries in my region to speak about their rare diseases because there are stigmas about genetic illnesses. It can be difficult for patients to speak out, as it can be detrimental to the possibilities of marriage, family, and career prospects. Some of these barriers have broken down, but they still exist for the most part in this region. My mission is to encourage and empower patients and their family members to talk about HAE to use their voices to facilitate change.
What changes have happened for people with HAE in your region whilst you have been RPA?
Through the RPA program, I have successfully located patients or family members who want to make a positive change – this has resulted in starting member organizations or patient groups and assisting many others with capacity building and accessing modern HAE treatments. While I am proud of this achievement, I am very proud that communities of people with HAE, built from nothing, actively support one another. Furthermore, physician networks are in place to assist patients at any time, day or night.
What next steps will you be taking as an RPA to support your region?
The ultimate goal is for all countries within my region to have access to funded modern treatment options. Together we can achieve this goal by creating a platform for awareness and education in countries, continually using the experience and knowledge and implementing the HAEi tools, resources, and programs to build on the advocacy. And making HAE more well-known and a more understood rare disease throughout the region.
Want to know more about another HAEi Regional Patient Advocate?
>> Central Eastern Europe, Benelux and Middle East
>> Central America and Caribbean
>> Mediterranean, North Africa and British Isles
>> Nordics, Germany, Austria and Switzerland