Heather was diagnosed with Fibrous Dysplasia at 10 years old. She has had multiple operations throughout her life and manages her own chronic pain. She also has problems with her thyroid, fatigue and spine. Heather joined FDSSUK as a member around 10 years ago, hoping to learn more about the disease and meet other patients. Heather now volunteers for FDSSUK and is the secretary. She is very passionate about raising awareness of the disease, and enjoys being part of a community that allows her to interact with other patients and carers. This is her lockdown story!
This week’s blog is written by Ashley Clarke. Ashley takes us back to when her dad was first diagnosed with Huntington’s Disease (HD), and reflects on her journey from daughter and carer to HD activist and lifestyle blogger. See how she’s living life in HD!
Taking place from 19 – 23 January 2020 in London, UK, for the first time the world’s leading experts in EB research, clinical management, and the EB Community will be brought together in one place – the 2020 EB World Congress.
In this week’s blog, we would like to introduce you to our new volunteer, Danny de Vries Robbe. Danny joined us from Royal Holloway University London for a two-week placement which focused on the development of e-learning materials for our portal.