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 what some people don’t know is that it can cause lots of other symptoms too. On rare occasions, it can even be life-threatening, and approximately 15-20% of patients will develop SS secondary to some form of cancer, most commonly, a group of blood disorders called myelodysplastic syndromes (MDS).

Amongst the SS community, those 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 insulted or 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 socialise.
  • 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.
  • Headaches, less commonly, migraine.
  • Muscle pain.
  • Joint pain.
  • Eye pain associated with certain eye symptoms.
  • Occasionally, painful mouth ulcers or other types of oral lesion.
  • Rarely, pain as a result of other parts of the body being affected, including internal organs.

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 those with this condition 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. 💛

© 2012-2017 Sweet’s Syndrome UK

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8 thoughts on “Challenges of Living with Sweet’s Syndrome

  1. I have been dealing with Sweets for four years now. The first year was the worst, not knowing what was wrong with me. I dealt with fever, lower back pain, joint/muscle pain, earache, tooth pain, inflammatory conjunctivitis, and the horrible plaque like lesions all over my torso! I was put on various drugs which caused other problems including 35 lbs of weight gain! I think the worst part of this disease is not knowing…why I got it, what caused it, when will it strike again and what ailments are from Sweets, or something else? I currently take SSKI drops twice daily to attempt to control my symptoms. These groups are a God sent, knowing we are not alone!

    Liked by 1 person

  2. Hi Martha,

    Dealing with so many SS symptoms can be incredibly difficult, and the side-effects of medication make it even harder.

    In most cases, there isn’t a trigger for SS, but I think that a lot of Sweeties feel that if there was a trigger at least they could understand why they developed SS, or deal with or remove that trigger if it was possible to do so.

    The unpredictability of SS can make day-to-day life very tough, not knowing when your next flare-up will be. This can make it difficult to work/hold down a job or do things on a regular basis; plan a day out or holiday; make you worry about doing something that may trigger your SS (even when you don’t know if there’s a trigger).

    As you’ve mentioned, trying to determine whether or not your symptoms are caused by SS is also tricky. ‘Are my symptoms being caused by SS, the side-effects of medication, an underlying or separate condition, a new condition, or maybe my symptoms are a combination of these things?’ This then leads on to ‘Do I need to see a doctor, or what treatment do I need for my symptoms when I don’t know what’s causing them? Do I need tests to determine what is causing my symptoms? Do I need tests to figure out if I have a new condition?’

    Thank you, Martha, for posting about some additional difficulties that you have faced that weren’t mentioned in the blog post. This information will be useful to other Sweeties.

    Michelle. x

    Like

  3. Hi all. Just want to add a little from my experiences. I was diagnosed in 2010 from a biopsy. I have a graph to my eardrum, damagedby Sweets. My wife noticed that I develop my lesions during or shortly after times if high stress. They also occur from skkn injuries. The biggest issue for me however is the joint pain usually the worse in my hips. Fatigue is also an issue.

    Liked by 1 person

  4. Hi Ron,

    SS can affect the ears/hearing, and on rare occasions, even lead to permanent hearing loss.

    Some people with SS feel that their condition can get worse when they are stressed (it’s something that Sweeties mention a lot), even though SS isn’t DIRECTLY caused by stress. However, stress can mean that steroids need to be restarted or the dosage increased, and there is some evidence to show that stress can negatively affect the skin.

    Steroid drug withdrawal (includes info on why steroids need to be increased or restarted during times of stress): https://helpforsweetssyndromeuk.wordpress.com/2014/10/14/steroids-and-oral-steroid-drug-withdrawal/

    Harris, S. (2017) Skin problems health centre: The effects of stress on your skin. WebMD, Jan 12 (online). Features comments from Nina Goad of the British Association of Dermatologists, and Consultant Dermatologist, Dr. Anthony Bewley: http://www.webmd.boots.com/skin-problems-and-treatments/features/effects-of-stress-on-your-skin

    Skin injury or skin damage and irritation which triggers the development of new SS lesions (pathergy) can be a real issue for some SS patients, and even something such as a simple scratch or using a skin product that irritates the skin can trigger those lesions.

    Joint pain can be difficult to manage, and even persist after the skin lesions have settled. Also, when SS patients have a lot of problems with joint pain, prednisone, the most common treatment for SS, often isn’t enough to manage symptoms.

    Fatigue can be debilitating and very difficult to manage. It’s so much more than simple tiredness, and as it occurs as a result of inflammation in the body, doesn’t go away when you do the usual things that help with tiredness, e.g. get some sleep, get some fresh air or exercise.

    Thank you for discussing your difficulties, Ron, and bringing to light some important issues.

    Michelle. x

    Like

  5. I live in Australia I’m 70 yrs old and was diagnosed with sweets syndrome in February 2017
    I have had lymphoma of the spine now in remission 2012..breast cancer 2015 now in remission. My god this ss is such a pain I had terrible sores on legs arms and hands, which have mostly healed but some are still sore. But I’m am so tired and I had trouble walking I use a frame or stick (due to lymphoma) but my mobility is getting worse I was so glad to read this info about how people feel and react, it makes me feel better I thought it was just me thanks uk

    Liked by 1 person

  6. Hi Val,

    You’ve clearly been through so much. The last thing you needed was SS on top of everything else. I’m sorry to hear that you have serious mobility issues, and I hope you’re getting the support you need.

    I’m glad that this post has made you feel a little less alone in dealing with your SS.

    Michelle. x

    Like

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