by purvi | Nov 27, 2023 | news and press
< Back to Sanius content Managing an Ultra-Rare Disease with Sanius Hello, I’m David Rose and I have an ultra-rare disease called Occipital Horn Syndrome (OHS). OHS is an X-linked recessive mitochondrial and connective tissue disorder that was previously considered...
by purvi | Nov 27, 2023 | news and press
< Back to Sanius content Mwape’s Story: Life with Symptomatic Sickle Cell Trait Mwape Miller is an author, artist, traveller, cook, and music lover. She is also someone with symptomatic Sickle Cell Trait (SCT). Typically, SCT does not result in symptoms but, in...
by purvi | Nov 27, 2023 | news and press
< Back to Sanius content How Patient Communities Drive Change A well-informed patient is a powerful thing. When patients are knowledgeable about their health and their conditions they’re able to take an active role in their care. This can be anything from providing...
by purvi | Nov 27, 2023 | news and press
< Back to Sanius content The Legacy of Evan Nathan Smith: Fighting For Care When he was denied oxygen, Evan Nathan Smith dialled 999 from his hospital bed. Evan was in hospital after developing sepsis after a routine procedure, which triggered a Sickle Cell crisis....
by purvi | Nov 27, 2023 | news and press
< Back to Sanius content Keeping Mobile Through Exercise Strenuous exercise should be avoided by those with Sickle Cell disease, but this does not mean you need to stop being active altogether. Mild exercise can help with sleep and improve muscle function, helping...
by purvi | Nov 27, 2023 | news and press
< Back to Sanius content Our Member Stories September 2021 Reia – Help in a Crisis “I’d been having a sickle cell crisis for over 2 weeks but was managing it at home. As the pain grew more intense I was taking my morphine doses closer each time. I knew I had an...