|The Royal Free Hospital, 27.9.17|
Furthermore, I remain overjoyed that my ‘skin is cured from scleroderma’, having not been able to stretch my arms, in 1997, due to the extreme skin tightness.
Which, even on the hottest of summer days, brings along many challenges, as well as, Raynaud’s attacks, due to any temperature decrease, regardless of the resulting temperature being ‘warm’.
|Hottest day of 2013|
Thankfully, my symptoms are currently stable. I have regular monitoring appointments.
These include annual heart and lung tests. which are carried out at my local hospital, here in Southport.
I am now living with the damage which, the disease at its most active, caused.
I have detailed more about my patient experience and journey, on Day 12 of my global patient profiles campaign, for Scleroderma Awareness Month 2018.
Although these unmet needs are not immediately life threatening, they cause havoc with the day to day quality of each patient’s life.
|Fellow patient Miss Universe, me, Christine and Lauren from NIHR team|
|Prof Denton and I, Sept 2017|
|Dr Kevin Howell (Raynaud's world trailblazer) |
|Dr Sykes, Consultant Rheumatologist Southport Hospital||, August 2017.|
|Andrea, Southport Hospital Pharmacist, August 2017|
Happy 70th Birthday.
Planning for the Future, Click here
Rare Disease Day 2020:
Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here
Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt here
Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click here
Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here
2017 Rare Disease Day Medical Research
2016 Rare Disease Day Patient Voice
provides the brightest light,
for the illumination of
the rare disease patients’ plight.
To read about medical research at the scleroderma unit, 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
2018 Scleroderma Awareness Raising and Medical Research, Click here
Unmet Medical Needs, Click here
Calcinosis Video, Click here
The scleroderma tooth fairy, Click here
Skin Cancer and scleroderma, Click here
|Prof Chris Denton and I, Sept 2017|
This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.
|Chat Magazine May 2019|
|James Carver, myself, Prof Chris Denton|
I am immensely grateful to James Carver, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
|The global Raynaud's trailblazer - Dr Howell and I, Sept 2017|
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.