Former RGN, Michelle Holder, was diagnosed with the rare condition: Sweet’s syndrome
In the mid to late 1990’s, I was diagnosed with an uncommon inflammatory condition called Sweet’s syndrome (SS).
It’s a condition mainly characterized by fever, skin lesions and plaques, but can also cause a wide-range of other signs and symptoms. At the time, no doctor or nurse could provide me with any information concerning my condition, so I was forced to take a ‘wait and see’ approach, dealing with a multitude of problems as they came along.
Today, the situation isn’t much better, despite the fact that over the past ten years SS has become more widely recognised and the number of available case-studies has significantly increased. SS patients are still not being provided with adequate information in hospitals or the community, and the newly-diagnosed are having no choice but to resort to the internet, seeking various types of information online.
Most online information is in the form of medical case-studies or comes from various support-group websites. Both are problematic. As would be expected, case-studies contain lots of medical terminology, and this can be confusing for patients, either ‘scaring them to death’ or leading them to come up with their own ‘crack-pot’ theories as they try to interpret the data.
Worryingly, some healthcare professionals are giving this ‘unadulterated’ information to patients. On one website, a SS patient stated, ‘they (dermatology clinic) gave me some print-outs with awful pictures…they scared me so much.’
Online support-groups are of even greater concern, providing information that can be inaccurate and dangerous. There is a huge amount of scaremongering on these sites, not only about SS, but also regarding treatment. The corticosteroid Prednisolone is the standard treatment for SS, but is being targeted as a ‘bad’ drug. Some individuals are suggesting that patients who take Prednisolone will either develop renal failure or make their SS worse. As a result, patients are discontinuing treatment, placing themselves at high risk of developing adrenal insufficiency and/or leading to poor management of their condition.
The consequences of not providing SS patients with adequate information can be even more far-reaching, having a long-term, detrimental psychological impact. In a desperate plea for help, one support-group user stated, ‘I have researched SS to death…I cannot live this way.’
This is a deeply alarming statement and one that should not be ignored.
Sweet’s syndrome; there’s nothing sweet about it.
Michelle Holder is a former RGN (Cardiff and Vale University Health Board) and former Sweet’s syndrome patient.