Most people living with Ehlers-Danlos syndrome (EDS) are used to a long and straining path to diagnosis, full of prejudice and gaslighting. Davina Brigant knows this journey all too well. “As far as I remember, during my childhood, I always had some problems. I was very flexible. People always told me that about myself, because at first, I looked sporty, but when I started to move, they saw my flexibility. I was also suffering from belly problems, headaches, migraines, and many things that I now know may be related”, she says.

“I saw many doctors in France, but they did not give me any answers. The specialists didn’t listen to me. They said that it was in my head. So I gave up and tried to manage the problems myself. Later I read an article about 23 signs of hypermobility, and I matched almost all. I also tried the Beighton score, first by myself and then with a provider, and that was when I thought: maybe I have this condition”,  Davina adds.

For years, her pain and symptoms were dismissed by doctors until a recent genetic test provided a clue: a previously unseen variant in the ADAMTSL2 gene, possibly linked to a rarer form of EDS. Yet because she is the only known patient with this variant, the result remains inconclusive. Officially, she is still undiagnosed — caught in a medical limbo that leaves her without closure. Out of this deeply personal struggle, however, an idea was born: the Brigant Lab. Together with her partner, molecular biologist Benjamin Brigant, Davina set out to build a laboratory that merges lived experience with cutting-edge science — with the goal of advancing knowledge about EDS and other connective tissue disorders.

The Brigant Lab

The Brigant Lab focuses on chondrocyte biology, the study of the cartilage cells that are central to joint health, and investigates how these cells behave under pathological conditions. Their projects explore the molecular mechanisms of rheumatic diseases, osteoarthritis, and now also the Ehlers-Danlos syndromes, with a special focus on inflammation and altered signaling pathways.

A key aim is to identify novel biomarkers through building patient cohorts. By analyzing molecular markers across patients, the lab hopes to dramatically shorten the time to diagnosis for EDS. Today, many patients wait on average more than a decade before receiving a confirmed diagnosis — years in which symptoms worsen, treatment is delayed, and often, permanent harm occurs.

“We are focused on connective tissue disorders with a priority on EDS, because there are many people who have EDS and are misdiagnosed or not diagnosed at all. People like me, who don’t have the ‘look’ or only mild symptoms, or who have a gene variant not yet classified as pathological, often stay in a gray zone. That is why we are working to find biomarkers and new tools to accelerate diagnosis and simplify life for patients”, Davina explains.

Causative Gene(s) for hEDS

Today, we know causative genes for all EDS types but the hypermobile EDS. However, recent research by the Norris Lab in the United States has already discovered one gene implicated in a subtype, Kallikrein, but much of the genetic and molecular landscape remains unexplored. The Brigant Lab aims to complement this work by leveraging technologies such as genome editing, functional genomics, and phenotypic models to uncover new disease mechanisms.

Building Bridges in Research

While still in its early stages, the Brigant Lab envisions itself as a bridge across disciplines — connecting fundamental research, translational studies, and patient-centered care. The team is currently preparing international grant applications, seeking collaborations, and laying the groundwork for projects that will not only expand scientific knowledge but also improve clinical practice.

That combination of personal experience, scientific rigor, and clinical urgency makes the Brigant Lab a promising new player in the rare disease research landscape.

Future Plans

At the moment, the laboratory is still in development. Its website and social media channels are gradually being filled with content, and several consortium-building efforts are underway. The centerpiece, though, is funding. And that’s the biggest hurdle to overcome. Once their funding goal is reached, operations will start and we will hopefully hear more news from the Brigant Lab over the years. 

For people like Davina — who has lived for years in the grey zone between recognition and dismissal, between diagnosis and non-diagnosis — the lab is more than a scientific venture. It is hope: the hope for validation of her lived reality. 

Karina Sturm

September 2025