Challenges of Living with Sweet’s Syndrome

Sweet’s syndrome (SS) is a rare autoinflammatory condition and neutrophilic dermatosis. The most common symptom is skin lesions, but can cause other symptoms. On rare occasions, it may be life-threatening, and approximately 20% of patients will develop SS secondary to some form of cancer, the commonest being a group of blood disorders called myelodysplastic syndromes and acute myeloid leukaemia.

Amongst the SS community, people with SS are typically referred to as ‘Sweeties’, and for them, living with SS can be incredibly difficult. This is not only due to the symptoms of SS, but to the many obstacles and unexpected challenges that they can face along the way. For example, problems associated with a change in appearance, depression, debilitating fatigue, isolation, pain, mobility issues, job loss and financial difficulties, to name but a few.

Living with Sweet’s syndrome. How can it affect a Sweetie?

Change in appearance.

• Visible skin lesions.
• Permanent skin discoloration or scarring.
• Weight gain due to reduced mobility or side-effects of medication.
• Rarely, hair loss due to the side-effects of medication.

Change in mood, depression or other changes in mental health.

• Increased risk of anxiety or depression due to having to live or deal with certain difficulties or symptoms, e.g. not well enough to socialise, debilitating fatigue, or frequent or chronic pain.
• Changes in mood due to the side-effects of medication.
• Mental changes associated with the rare neurological variant, neuro-Sweet’s disease.

Loss of confidence.

• Due to change in appearance.
• Due to being verbally abused because of a change in appearance.

Isolation.

• Not wanting to go out due to change in appearance.
• Being too ill or in too much pain to work or socialize.
• Symptoms of SS or the side-effects of medication making it difficult or impossible to do certain activities.
• Others not wanting to associate with Sweeties because they think that their skin lesions can be ‘caught’.

Pain.

• Painful skin lesions.
• Headache/migraine.
• Muscle pain.
• Joint pain.
• Eye pain.
• Occasionally, painful mouth ulcers.

Mobility issues.

• Difficulty walking and moving about because of joint pain and swelling.
• Painful skin lesions affecting or restricting movement.
• Neuro-Sweet’s disease causing limb weakness, or problems with co-ordination and balance.
• Fatigue causing limb heaviness.

Lack of sleep.

• Pain or other symptoms of SS making it difficult to sleep.
• Side-effects of medication negatively affecting sleep, e.g. insomnia or nightmares.

Difficulty accessing information and treatment.

• Struggling to find a doctor who has any understanding of SS.
• Struggling to access patient information, on or off-line.
• Health care staff unable to answer any questions that a Sweetie might have, and not able to provide information when requested.
• Health care staff not taking SS seriously enough, or insulting a Sweetie because they don’t understand SS.
• Having to wait a long time for the right treatment, or being denied access to certain treatments.

Difficulties associated with work.

• Sweeties being bullied by work colleagues or customers because of their appearance.
• Being bullied by an employer because they have to take time off, and are therefore viewed as a malingerer or a costly drain on resources. For example, having to take sick-leave when ill, being admitted to hospital, or having to attend doctor or hospital appointments on a regular basis.
• Sweeties having to reduce their hours, even if they can’t afford to.
• Difficultly gaining promotion, demotion or job loss.

Financial difficulties.

• Struggling to afford to pay for care if a Sweetie lives in a country where health care is privatised.
• Financial difficulties due to having to reduce hours at work, leave a job, being bullied out of a job or being sacked.
• Struggling to access benefits due to the assessors or doctors having a poor understanding of SS and it not being recognised by the benefits system. This can happen even when a Sweetie is seriously ill.

Unsupportive family and friends.

• Family and friends refusing to take SS seriously enough, and telling Sweeties to ‘just get on with it!’
• Family and friends giving unhelpful advice and telling Sweeties that they are choosing to be ill (‘patient blaming’). For example, ‘ You wouldn’t be ill if you just ate more healthily, cut out gluten, didn’t get stressed, tried this herbal supplement, spent time in the sun, put essential oils on your lesions, or tried homeopathy.’ Some of these things can even make SS worse.
• Getting annoyed and angry with a Sweetie because they can’t do what they once did, or are no longer in a position to help out others in the way that they did before.

There are many more challenges, obstacles and difficulties that could be added to this list, so please feel free to mention your own in the comments section below this post.

Today is Sweet’s Syndrome UK Day! Please share this post to help raise awareness of SS and the difficulties that Sweeties have to deal with, often on a daily basis. Also, a big thank you to all the health care staff, employers and work colleagues, family members and friends who DO support Sweeties across the globe. You do an amazing job, and frequently have to face your own challenges when it comes to helping and supporting those with SS. 💛

2012-present, Sweet’s Syndrome UK