Roxana’s Story: Attending the BHD Symposium

In this blog, Roxana shares her experience of attending our recent symposium. As someone living with BHD, she hoped to share her story, along with the barriers and challenges she faced throughout her journey.

How did you find attending the symposium as a whole?

The event was a wonderful experience as it allowed me to expand my knowledge about my condition as a BHD patient, connect with BHD Foundation staff, patients, and researchers’ community.

How did you find presenting your patient experience talk at the symposium?

I was super nervous; however, I wanted to share my journey as a BHD patient, the barriers and challenges I had to face, and I believe I did it quite well. 

What was it like to meet other BHD patients in person?

There were few BHD patients present at the event, and I was the only one whose native language was not English; that caught my attention because I expected to find similar voices to mine or other voices in different languages. This made me reflect on the opportunity I had of being diagnosed in London, because I live here. If I had been living in my home country, I would probably have been misdiagnosed or not diagnosed at all, with a detrimental impact on both my quality of life and life expectancy

From a patient advocate perspective, was attending the symposium helpful for your general knowledge of BHD/research?

Yes, it was highly relevant. I had the impression that there is a greater interest in research on renal tumours and kidney cancer because BHD could have an impact on other diseases. Another interesting topic was that the majority of diagnosed patients are geographically located in the USA and Europe, although probably not all are originally from these countries due to migration and the multicultural nature of these societies. I also liked how researchers from China highlighted how they are overcoming the average 7-year delay in diagnosing this disease to raise awareness about patients with this condition.

What has the experience taught or inspired you to do in your own experience of BHD?

My journey through BHD has been quite a challenge. I am so lucky to have been diagnosed in London because I live here, but I am originally from South America. On this path, I have learned to overcome barriers such as language (the majority of the information is in English with highly technical and medical terms), understand my condition, learn how the NHS works, find better ways to overcome barriers and access healthcare services and connect with patients like me to feel emotionally supported. All of these things have generated a particular interest in making this disease visible and working to overcome existing barriers so that individuals and communities can learn about this condition, stay informed, share life experiences, engage with the public, and, above all, undergo a reflective exercise to feel empowered, take actions, and remain positive. 

Is there anything you would like to see in the next symposium as a patient advocate?

Of course. In this symposium, there were representatives from Japan and China, which was fantastic as they increased visibility of this disease. I would like to see progressively and significantly driven initiatives for collaborative research globally, especially in countries where there is a lack of knowledge in the field. Additionally, promoting collaborative research networks, as well as learning and sharing experiences and technology from other BHD countries/continents is imperative for raising awareness of this syndrome. Finally, identify those hidden people with BHD will be possible if diagnosis and genetic blood tests are more accessible, so the creation of more systematic ways of gathering data is significantly important.  I would also like to see researchers’ speakers from other continents in the next symposium, may be from South America, Central America, India or Africa; that would be great.

Roxana has also written her blog for us in Spanish. You can read the translated blog piece by clicking here.