No two patients present with the exact same identical set of symptoms.
Diffuse / systemic scleroderma affects the entire body, making for a multi-disciplinary medical team paramount, for best patient optimum care.
Attending and preparing for medical appointments, is a full time job, even when the symptoms have stabalised.
This includes my daily skincare routine, which has contributed to my recent medical breakthrough ‘my skin is cured from scleroderma’, as well as, my daily juice smoothies and strict diet, Click here
On Dec 8th 2016, I was live on the Scleroderma News facebook page, talking about my recent skin reversal, as well as, I shared some of my scleroderma survival tips.
This was my live debut, and although my phone signal brought about an earlier finish than planned, I very much enjoyed the experience, and I was delighted with the fantastic audience who joined me live – Thank You.
This is why, an early diagnosis is essential for a more favourable outcome to the scleroderma patient. I wrote more about this, here
On October 31st 2016, the UK Government published an open consultation on ‘Work, health and disability green paper: improving lives’.
I would urge every UK patient and non-patient alike, to add their view to this consultation.
The hidden, sometimes invisible, challenges include chronic fatigue and pain.
Both, can not be underestimated with the devastation that they can bring, alone or combined, on a day to day basis, to the scleroderma patient.
I wrote about FATIGUE, here, PAIN and HAIR LOSS, here
Unfortunately, the full time job of being a scleroderma patient does not allow for annual leave or a ‘holiday’ from the symptoms, yet.
Investment in medical research combined with patient interaction by way of spreading awareness and involvement is key for a permanent scleroderma holiday of the future.
Living the dream, scleroderma style.
An edited version of this article was published here, in my Column with Scleroderma News.
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