During our visit to Sweden for our annual meeting, the EHA Team had the opportunity to go to Lund to meet with Professor Åsa Petersén, a psychiatrist, researcher, head of the HD Center, and Deputy Chief of the EHDN, as well as Camilla Svensson, a registered nurse. They both work at the HD Clinic at Skåne University Hospital (SUS) in Lund.
It was a truly valuable experience. We were warmly welcomed and learned more about the remarkable work being carried out at the clinic. Åsa is both a psychiatrist and a researcher, meaning she spends time in the lab as well as with patients. This combination of clinical care and scientific work made listening to her particularly inspiring for the team.
During our visit, we saw samples of brain tissue from HD mouse models under the microscope, as well as human brain tissue that had been generously donated for research. It was a powerful reminder how important brain donation is for science, which allows scientists around the world to address unanswered questions and move research forward.
Åsa and her team are currently focusing part of their research on early changes in the hypothalamus, a small region of the brain that has been demonstrated to be affected in other diseases such as ALS and Parkinson’s. They are also taking a closer look at other genetic modifiers that have a significant impact on the age of onset of the disease.
When Professor Petersén is not in the lab, she is in the clinic working closely with Camilla, who ensures that patients and families receive personal, consistent, and compassionate care. Camilla plays a key role in making sure that visits are not overwhelming, something that can easily happen if patients see a different professional every time. She also serves as the first point of contact for patients and families who reach out to the clinic.
Professor Petersén and Camila are part of a multidisciplinary team that also includes a geneticist, physiotherapist, occupational therapist, speech therapist, nutritionist, social worker, neuropsychologist, and neurologist. When a patient comes to the multidisciplinary team visit, typically once a year, all these professionals see them on the same day. To avoid making the visit too tiring, they work in pairs. For example, the physiotherapist and occupational therapist assess motor skills and daily life tasks together, while the speech therapist and nutritionist work as a team to assess swallowing difficulties and nutritional needs. At the end of the visits, all the professionals meet to share their impressions and agree on the best recommendations for the patient. In between these annual visits, the patient will be followed up by the psychiatrist or neurologist as well as by other professionals as needed. Similarly, tailored clinical visits are provided for people who carry the mutant HD gene and/or are in early stages of the disease.
When someone comes to the clinic for the first time, whether they are at risk or are already symptomatic, Professor Petersén and Camilla are the first professionals they meet. Having a psychiatrist as the initial point of contact allows for careful support around genetic status and testing, in collaboration with the geneticist. This approach also helps build trust since the beginning, something that is very important for patients and families navigating HD.
In Sweden, all patients that come to specialist care are part of a national registry: every time someone is diagnosed with HD, or any other disease, the information goes into a database that can be accessed after appropriate legal and ethical approvals. Patient identities remain anonymous, which ensures privacy while allowing healthcare providers to have a clear picture of the prevalence of HD within the country.
Another initiative the Lund HD Clinic is proud of is its annual information event. Once a year, patients and families gather together with professionals to connect, share experiences, and learn more about different aspects of living with HD as well as the latest research.
During our visit it was clear that the current team, and those who worked before them, have made an effort to offer the best possible care to the HD community. Thanks to their dedication, patients in Sweden receive excellent care, even within the limitations that the healthcare system can sometimes present. Professor Petersén also emphasized how important it is to work within a team that is committed and passionate about serving the HD community, something that makes their work both possible and meaningful.
The Swedish Huntington’s Association and YTAN (who offer digital support to young people impacted by neurodegenerative disease) are also essential partners of the HD community in Sweden, both are strongly committed to supporting families and actively involved in the Moving Forward project.
The EHA team left the visit inspired to continue advocating for multidisciplinary teams and effective strategies that ensure the HD community is well taken care of. As a European organization and community, It is important that we exchange ideas and learn from each other in order to keep improving the quality of care and support for HD families across Europe.
We sincerely thank the Lund HD Clinic team for their longstanding commitment to the HD community, and we hope their example inspires many more clinicians and care teams.
– Article written by Jarelys López Delgado