Interview with Agnes Suard, France

Who are you and what is your relationship to OI?

I am Agnes Suard, 55 years old. I am vice President for around one year of AOI, the French OI association. I don’t have the disease, but my husband and three of my 4 children have it. So, I have been living with the disease for 29 years!

In what way does OI affect you personally?

I had to learn about the disease and how to manage it. My husband and my children have a light version of OI type 3. My husband is not very affected by it and lives a life without any fractures or pain. But during their childhood my children had to face a lot of fractures and hospitalization. Especially my youngest son, who is 14 now, has had 35 fractures and a lot of pain. He is in a wheelchair for his security in school and because of the fatigue.

In a nutshell – tell us a little bit about the organization you represent!

AOI, Association de l’Osteogenese Imparfaite, was created in 1985. In 2025 we will celebrate its 40th anniversary! Its mission is to inform, advise and create a link between patients and the medical professionals. And also support research. We are 9 volunteers on the board.

Do you have projects which might be of interest to readers of OIFE magazine?

In 2024 we organized two national events, a meeting between patients and doctors. But also workshops. We have some news ideas for 2025, but it is too soon to speak about.

What do you do when you’re not doing OI-work?

I used to be an executive secretary. But I stopped working with the birth of my latest son. I am working now for an NGO for international youth camps, and I am a volunteer in Mecenat Chirurgie Cardiaque.

This is an organization that allows children with heart defects to be operated on in France when this is impossible in their country. My passion next to my family is knitting!

In your opinion – what is the most important task for national OI organizations?

I think the most important task for national OI organizations is to create links between people to avoid the feeling of isolation. Together we feel stronger!

Do you have any other messages for the readers of OIFE magazine?

Keep smiling! Life is beautiful and better when we’re together!

This article has first been published in OIFE Magazine 1-2025