After SARAID failed to set up their Just Giving account, I was therefore only supporting three charities, and seeing as everywhere says I'm supporting four, I decided to choose a charity very close to members of my family's heart. As you will know if you have read the second post on my blog, my aunty Nakita died in August this year. She was just 36 years old. I am already supporting Lupus UK in memory of her, but I have made the decision to also support Hughes Syndrome as she suffered from both Lupus and Hughes syndrome, which combined, caused her early death. Hughes syndrome is also known as 'sticky blood', and can be fatal if not caught and controlled early. I have chosen to support this charity as I believe people need to be more aware of what Hughes syndrome is and what it does, as it is not a very well known disease. We need to raise awareness, as Nakita's sister Petrina said, 'to stop any other family go through what we've been through'.
'Hughes syndrome is an autoimmune disorder which can present many clinical features, some of which can be life threatening, including strokes and thrombosis, and it can also be the cause of recurrent miscarriage. The good news is that, once diagnosed, Hughes Syndrome is potentially treatable; the bad news is that, as the condition is relatively new, it often goes undetected or misdiagnosed. With your help we hope to raise the profile of Hughes Syndrome so that we can discover more about its causes, prevalence and treatment.'
So to not only raise awareness of this relatively new and rare disease, but to prevent any other family losing a loved one, please dig deep and sponsor me generously by donating to the Hughes Syndrome Foundation!
You can find out more about the charity from their website;
Listen to Nakita's sister Petrina's radio chat;
And of course donate;