The exception to this rule is the limited subset version of scleroderma patients.
score often peaks within one year of dcSSc onset
- There is an association between severe skin involvement and burden of organ-based complications
- Death or major organ-based morbidity occurs in 50% of dcSSc cases within 3 years of disease onset
- Stabalization or improvement in skin sclerosis within 2 years of diagnosis may confound studies designed to prevent skin score worsening
- Latent Trajectory Modelling identifies distinct subgroups defined by skin score
For the bath, I use liquid petroleum (Oilatum Plus) and then, after towel drying, I use Hydromol emollient cream all over my body.
I use sensitive skin skincare laundry products and only wear clothing that is soft against my skin. Sadly, my Armani jeans have remained at the bottom of my wardrobe since diagnosis, as denim is too heavy against my skin, causing my inner Bond girl to go AWOL.
I had spoken with this secretary a few years ago, when this calcinosis/BCC mystery commenced its journey, and she remembered me, so luckily she understood that I was having an uncharacteristic, albeit embarrassing, reaction, and she was most kind and supportive. I have already purchased the chocolates to take to her on the appointment day!
I also know that I am very blessed to have gotten to year 19 without a skin biopsy, and I am in awe of my fellow (much braver than I) patients, who have been subjected to skin biopsies when their skin is tight and inflamed.
I went into more detail about this in 'The Magic of Summer'.
An edited version of this article was published here, in my Column with Scleroderma News. August 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