Tuesday 23rd April 2024
RAIRDA Survey
Have your say on the way your services are working for your Rare Autoimmune Rheumatic Disease (RAIRD)
Slightly older ears may remember the days of ‘CREST’, the now outdated term for Scleroderma. But what did ‘CREST’ mean? Why was it used? And why was the term abandoned in mainstream medical practice?
Slightly older ears may remember the days of 'CREST', the now outdated term for Scleroderma. But what did 'CREST' mean? Why was it used? And why was the term abandoned in mainstream medical practice?
'CREST' is an acronym for 5 symptoms:
C – Calcinosis (calcium deposits)
R – Raynaud's Phenomenon (pain and colour change in the hands and feet in response to temperature change or stress)
E – Esophageal dysfunction (difficulty swallowing)
S – Sclerodactyly (tightening or hardening of skin)
T – Telangiectasia (small red spots on that hands and face)
To those who are affected by scleroderma, most of these symptoms will sound all too familiar. In fact, the term 'CREST' seems like an easier alternative to Scleroderma, which can prove hard to pronounce. The term 'CREST' also lends itself to an easier explanation of the condition and friends and family may be more likely to remember the symptoms with the help of the acronym. So why does the medical profession tend not to use it anymore?
There are several reasons why 'CREST' is not used anymore, one being that the 'E', standing for esophagael dysfunction, doesn't summarise the entirety of the digestive complications that many people who live with systemic sclerosis experience. In fact, because of this, the acronym that seems like such a useful diagnosis tool, could actually hinder diagnosis by GPs.
Another reason proves to be an even more worrying one. According to sclero.org, GPs were diagnosing 'CREST' but weren't completing the diagnosis by determining whether it was Limited or Diffuse Scleroderma. This meant many patients were unaware of the extent of their condition. This led to the term 'scleroderma' to be the preferred diagnostic term in the hopes of encouraging further investigation into the patient's condition.
Unfortunately, this may mean that people who have been diagnosed with the term 'CREST' in the past may be unaware of whether they have limited or diffuse scleroderma. This is a vital differentiator in terms of treatment options and could mean that someone diagnosed with 'CREST' may not be receiving the appropriate treatment.
If you have or you know someone who has been diagnosed with the term 'CREST', we would encourage a visit to the GP to enquire about the type of scleroderma you/they are living with. In the meantime, you can read up on types of scleroderma on our website or connect with us on social media platforms including Twitter and Facebook.
Tuesday 23rd April 2024
Have your say on the way your services are working for your Rare Autoimmune Rheumatic Disease (RAIRD)
Tuesday 19th March 2024
The Scleroderma and Raynaud’s UK sponsored 'Science in Medicine School Teams Prize 2024' contest is now open for entries. The contest aims to engage sixth form school students with science in medicine, and challenges students to prepare an ePoster with a novel vision on how to promote the health and well-being of individuals with Scleroderma and/or Raynaud’s. If you're interested in entering, or know someone in sixth form who might be, read on to find out more!
Wednesday 28th February 2024
As high bills continue to threaten the health of those living with the debilitating condition; SRUK is appealing to energy companies to provide financial assistance to them.