Jenny's Story - Making a Difference in the Community

Jenny Marlé-Ballangé received a grant from the BHD Foundation to attend a Health Democracy training course. Through the project, she hoped to be equipped with the experience and skills for her to better support the BHD community. In this blog, we hear from Jenny, who shares more about the work she has done and the advice she would give to other patient advocates.

My name is Jenny Marlé-Ballangé; I am a retired university teacher. I am French and live in France. I was diagnosed with BHD in 2018 and created BHD FRANCE the following year. Both of my daughters and my granddaughter also have BHD.

What was the training course about and what did it involve?

I decided to follow this training course in Paris Sorbonne when I realised that I had to gain credibility with the medical profession and the administrative world in order to become a BHD expert patient. I also wanted to better serve patients with BHD and make them more aware of their ability to take action.

The course entitled “Health Democracy” involved two days training once a month on topics including Law, involving patients as experts or partners in hospitals or associations, writing pleas to raise awareness among administrations and/or politicians, understanding how the hospital world works and fighting discrimination. The nine-month training course culminated in a dissertation and an oral presentation. The theme of my dissertation was “How to apply the principle of Health Democracy to patients/users suffering from a very rare disease”.

What did you gained from the course?

Knowledge, determination, understanding and undoubtedly the feeling that I am now an expert patient, ready to help others acknowledge BHD as a rare condition which requires proper consideration. I am now also able to provide advice, moral support and encouragement to other people living with BHD in France.

What advice you would you like to give to other patient advocates?

In the case of very rare diseases such as BHD, the best way to make your voice heard is to join groups, associations or charities and exchange ideas on a regular basis. You also need to become a real player in your disease, and not hesitate to take initiatives with all the sectors concerned (doctors, administrations, specialists, federations, media).

We would like to thank Jenny for writing this blog and her dedication to raising awareness of BHD in France.