Welcome to the Sweet’s Syndrome UK blog!
About Sweet’s Syndrome UK.
Sweet’s Syndrome UK is a Cardiff-based patient advocacy group (PAG) that was founded by Michelle Holder in June 2012 to help those with the rare autoinflammatory condition and neutrophilic dermatosis, Sweet’s syndrome. The aims of the group are to:
- Provide evidence-based patient information, and improve access to information.
- Provide advice and support to those both inside and outside of the UK.
- Spread awareness of Sweet’s syndrome, particularly amongst health professionals and organizations.
Supporting charities and organizations, or where you can find us listed.
- Autoinflammatory Alliance (Disease Comparison Chart).
- British Association of Dermatologists.
- DermNet NZ.
- National Organization for Rare Disorders (NORD).
- New Zealand Organization for Rare Disorders (NZORD).
- Patient: Trusted Medical Information and Support.
- Rare Autoinflammatory Conditions Community UK (RACC-UK).
- Rare Disease UK.
- Skin Care Cymru.
What is Sweet’s syndrome?
Sweet’s syndrome (SS) is a rare autoinflammatory condition and form of neutrophilic dermatosis that mainly affects adults, but can also affect children and babies. The main symptoms include fever and painful skin lesions that most often appear on the face, neck and upper extremities, but can appear on any part of the body. On rare occasions, there are no skin lesions. Other common symptoms include fatigue (a medical term that includes a number of different symptoms, and is not the same as simply feeling tired); muscle pain; joint pain (arthralgia); joint pain and swelling (arthritis); headaches; eye problems; sometimes, mouth ulcers. On rare occasions, the lesions can develop in internal joints and organs causing more serious symptoms. Very rarely, SS may be life-threatening. The cause of SS is poorly understood, but it is associated with infections; blood disorders and cancers (malignancy-associated or paraneoplastic); autoimmune conditions; inflammatory bowel disease; medications (drug-induced); pregnancy; skin damage; immunodeficiency; overexposure to sunlight or ultraviolet (UV) light; vaccination. In regards to the latter, SS triggered by vaccination is incredibly rare – only 11 cases reported in medical literature in the past 42 years, globally – and a definite connection between the SS and vaccination was not established in some of those cases.
- The information posted on this blog is not a replacement for proper medical advice and treatment. Sweet’s syndrome must be diagnosed and treated by a doctor.
- Sweet’s Syndrome UK does not promote the use of alternative therapies. This is because there is no evidence to show that alternative therapies are either safe or effective in the treatment of Sweet’s syndrome. Please do not use this blog to try to promote or sell alternative therapies.
- All information on this blog is researched and/or written by Michelle Holder, Sweet’s Syndrome UK. Other individuals or groups are not permitted to present this information as their own.
- Offensive comments will not be tolerated. This may result in an immediate ban.
- Sweet’s Syndrome UK does not request or accept donations, and has never done so.
- Sweet’s Syndrome UK does not sell Sweet’s syndrome or rare disease services or merchandise, and has never done so. The sale of any Sweet’s syndrome or rare disease services or merchandise is not associated with Sweet’s Syndrome UK or Michelle Holder in any way.
- Please do not make comments asking for money or donations, or try to sell or promote the sale of services or merchandise via this blog.
- Sweet’s Syndrome UK does not work in association with any other Sweet’s syndrome organization, site, group, or social media site or group inside or outside of the UK. Sweet’s Syndrome UK and Michelle Holder are not associated with any of their activities, and cannot be held responsible for their activities or the information they provide.
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