Thursday 14th November 2024
Be Part Of The Answer
SRUK launches first of its kind Raynaud's Citizen Science campaign - calling for 10,000 people to Be Part of The Answer to unlocking progress on Auto-immune conditions affecting millions
Slightly older ears may remember the days of ‘CREST’, the now outdated term for Scleroderma.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Slightly older ears may remember the days of 'CREST', the now outdated term for Scleroderma.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.
Thursday 14th November 2024
SRUK launches first of its kind Raynaud's Citizen Science campaign - calling for 10,000 people to Be Part of The Answer to unlocking progress on Auto-immune conditions affecting millions
Wednesday 16th October 2024
Together, Heat Holders and SRUK can combine their expertise, passion, and resources to make a meaningful difference, offering practical solutions to those who are most affected by the cold.
Tuesday 23rd April 2024
Have your say on the way your services are working for your Rare Autoimmune Rheumatic Disease (RAIRD)