Raynaud's, and scleroderma can be invisible to the untrained human eye.
|Hottest day of 2013|
The general public can be totally unaware that the individual is suffering and just assume and label as ‘miserable’, ‘attention seeking’, ‘pessimistic’ and given a wide berth, when what they may just need is a bit of understanding and support.
These are not usually life threatening illnesses but can affect the quality of life such as pain 24/7, limited mobility, being unable to enjoy a good day out or extreme fatigue.’
|Dr Hannah Sykes, Consultant Rheumatologist, Southport Hospital,and I, Aug 2017,|
|Andrea, Pharmacist Southport Hospital, and I, Aug 2017|
|Dr Howell, Raynaud's world trailblazer, and I, Sept 2017|
I am reluctant to take any of the recommended narcotic therapies since they cause me to vomit and black out. 'Ah great - another day to spend in bed', is not my favourite mantra. However to look at me, people kindly tell me, ‘But, you look so well'.
|Prof Chris Denton and I, Sept 2017|
|James Carver, myself, Prof Chris Denton|
I am immensely grateful to James Carver MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
To view my article 'Why Global Collaboration is Important', Click here
2016 Rare Disease Day Patient Voice
for the illumination of the rare disease patients’ plight.
Becoming a Patient Research Ambassador for the NIHR, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here
Although the following unmet clinical needs are not immediately life threatening, they cause havoc with the day to day quality of each patient’s life.