|Deani Baillie, UK|
I saw a Vascular Surgeon as a private patient who did ultrasound and ordered bloods. My first step to moving closer to what would become an unknown rollercoaster ride.
I was told that I had CRPS, by one Rheumatologist, also that I would loose my fingers by a vascular surgeon and made to feel like I am a huge problem with my medical symptoms.
After seeking advice from others who have great understanding of Scleroderma, I am finally starting to put these behind me. Without the support and information along the way, I don't know how I would have come out the other end. Thank You Nicola, a true inspiration to all!
Numerous drugs trialled and 3 courses of Iloprost later, I am now on a path filled with positive people, knowledgeable clinicians, and my heart even though I can't say the same for my body, is ready to tackle whatever is thrown my way.
I know now, I will do all I can, to help minimise, the impact and negative experiences other may face when trying to come to a diagnosis.
I am now under the care of the Scleroderma Unit at The Royal Free Hopspital, where I can honestly say, my experience has been completely different! A huge positive..
The specialist nurse was very informative and I left feeling that my rollercoaster was on the way up!
Big thanks go to Deani for sharing her diagnostic experience.
Please send your prayers and thoughts to Deani as she is currently undergoing Iloprost treatment at the Scleroderma Unit, The Royal Free Hospital.
In 2015, I was honoured to be part of the medical team who devised the NHS Guidelines for treatment of digital ulcers in Systemic Sclerosis. Click here
I focussed on the treatment of digital ulcers on DAY 24 of Scleroderma Awareness Month 2016.
To read my articles:
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here
March Autoimmune Disease Awareness Month 2018, Click here
Global patient video, Click here
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
Expert Specialist Centres, Click here
World Scleroderma Day 29th June 2016, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
2016 Rare Disease Day Patient Voice