There is currently no cure for scleroderma, as well as, the causative mechanisms still remain a mystery, albeit, the understanding of the cause and cure, is accelerating faster than ever before.
The JSRD is dedicated solely to scleroderma and its overlap disorders.
Including, the approaches being utilised to endeavour to shine the desperately needed light on improving scleroderma patient treatments and care.
‘A gene on the X chromosome has been identified as associated with scleroderma…
To date there are 3 genes associated with scleroderma susceptibility that are located on the X chromosome - IRAK1, FOXP3, MECP2. IRAK1, FOXP3, are vital for T cell function and MECP2 is associated with DNA methylation’.
And certainly, extremely thought provoking, as the statistics show the incidence of scleroderma to be higher in females than males.
I see this participatory opportunity as a duty, as well as a pleasure.
A duty, as I hope to be able to help future scleroderma generations by utilising my body for medical research.
I am extremely grateful to all of those scleroderma patients who assisted in medical research which has enabled the long term outlook of living with a scleroderma diagnosis more favourable than ever before, in the event that an early diagnosis has prevented irreversible internal damage.
I have participated in SPIN questionnaires online, for a few years now, for purposes of research. I think that the ongoing SPIN research is a fantastic tool for providing understanding into the holistic approach to treating and responding to scleroderma.
If you would also like to participate in the SPIN study, please email me: firstname.lastname@example.org
The time taken for the newer biologic innovative medicines to reach the market place needs to be reduced, as does the access to these medicines, which have shown to have a remarkable improvement in disease progression and severity.
Medical research is making improvements, however, patients are quite literally ‘dying for a cure’.
I am grateful that I am still around to be a scleroderma patient, in the hope that, investment and commitment to accelerate medical research will instigate the light bulb moment needed for a #SclerodermaFreeWorld’ and #RaynaudsFreeWorld' – imagine that!
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
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