The University Hospitals Birmingham in the UK is one of the four centres in the country to run a clinic for patients with Bardet-Biedl syndrome. They’ve recently written an article talking about some of the work they do. You can find the article in full here, at UHB’s website.
About Bardet-Biedl Syndrome
Bardet-Biedl syndrome (BBS) is a disorder that can affect many areas of the body and cause a diverse range of symptoms that can vary a lot between patients. However, one of the main features of BBS is vision loss, caused by the retina deteriorating. Typically, people with BBS experience worsening vision over time, and, by late adolescence or early adulthood, many people with the disorder will be legally blind. BBS is also associated with obesity, extra fingers or toes, kidney problems, and intellectual disability. You can read more about BBS by clicking here.
Organising the Clinic
Every two months on a Friday, UHB holds a clinic for patients. About five patients are seen in the morning, and another five are seen in the afternoon. In between, there’s an organised lunch. The lunch is held to give patients and their families to meet each other and talk; BBS is a very rare condition, and the clinic can provide a useful opportunity to bring families having similar experiences together.
Another distinctive feature of the clinic is how it’s organised; instead of patients moving around to see doctors, the clinicians move between rooms to visit patients. This system was introduced after feedback from the patients, and, apart from tests that need specialist equipment, it allows patients to wait in one room.
Aneeba and Sarah
One of the clinical nurse specialists that works at the clinic is Sarah, who now knows many of the patients that visit the clinic well. For the last four years, Sarah and Aneeba (one of the clinic’s patients) have done fundraising fun runs together. Although they need to walk the route, they usually make it to the end of the course. In the article, Sarah encourages others to also take part in fundraising for BBS, either through fun runs or donations to BBS UK’s JustGiving page.