Scleroderma and Raynaud’s - The Fun Snatchers
As well as, my personal rationale for making the ‘patient profile combined with research campaign’, for June scleroderma awareness month 2017. Week 3.
Whereupon, I was subjected to a rigorous 18month chemotherapy regime which eventually stabalised my symptoms. With my ‘Skin now being cured from scleroderma’, 19 years later.
At the time, 1997, I was working in the pharmaceutical industry as a medical representative, as well as, studying towards my barrister qualifications on a distance learning basis. I was advised to give up my dream of being a barrister and to accept my medical fate.
I am now 13 years immunosuppressant / chemotherapy free. The only medication which I take is bosentan 125mg twice a day, along with Co-Proxamol analgesics for emergencies.
Sadly, the physical requirements of the barrister role were too demanding on my scleroderma and Raynaud’s damaged body.
Namely, musculoskeletal pain, GERD involvement, calcinosis and I have extremely sensitive Raynaud’s.
I also have a strict diet.
|Hottest day of 2013 - I had to wear Ugg boots and gloves|
Prior to my body developing scleroderma and Raynaud’s, I was a very outgoing social individual. Now, my social life, as well as my working / career life has been superseded by medical appointments taking priority in my diary and depleting my limited energy stores.
I am sure, every scleroderma and Raynaud’s patient can relate to a similar intense disappointment and sadness at not being able to fulfil a desire, due to their body not being up to it.
Infact, all exercise is extremely challenging for my ‘tin man’ body. I have the utmost respect for my fellow patients who are still able to exercise.
I have shared more of my coping strategies on my www.cosmicfairy444.blogspot.co.uk.
Please DONATE to help fund medical research at The Scleroderma Unit, The Royal Free Hospital, London where 100% of all of your monies will be used for medical research purposes only. Thank You.
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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
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