Sweet's syndrome paper - help needed. Please share your patient experiences.

[Shell567]

Hi all,

Kristin Langan is a doctoral nurse practitioner student at Rutgers University in the US. She is working on a huge, very in-depth paper on Sweet's syndrome, and would love to ask you or someone you know who has been affected by this disease some questions regarding your experience with it. She is interested in getting a very good idea of what it is like to live with Sweet's syndrome from the patient's perspective, and also wants to understand the true "lived experience" of this medical diagnosis.

If you would like to help Kristin, please answer the following questions:

1. What was/is the hardest part of having Sweet's syndrome?

2. What were your biggest fears/frustrations?

3. Physically, was/is it limiting in any way?

4. Did you get the appropriate care you needed from healthcare professionals?

5. Were they able to answer any questions you had?

Thank you,

Michelle (admin).

[Shell567 Administrator Sweet's Syndrome UK]

Kristin can also be found via the Sweet's Syndrome UK Facebook group, or email. Please leave a message for further details. 

[muffitt]

FAO KRISTIN

1.  Although I had lesions on my face, for me the worst part of Sweets are the sweats, nausea, joint pain and constant exhaustion.

2.  Getting a diagnosis.

3.  The sweats etc mentioned in (1) above could last for weeks on end and I was unable to get out of bed for any meaningful time.

4. My GP had no idea what was wrong with me and was not interested in finding out, despite the fact I had been having various symptoms.  Through my own endeavours I found a dermatologist who knew what the problem was.  It took 2 years to get to this point.

5.  Even the dermatologist said he had little knowledge of the condition but at least he tried.  I am now on Prednisolone, which creates more problems.  I am now seeing a Consultant at a London hospital and undergoing further tests.

Hope this is of interest to you.

Muffitt

[Shell567 Administrator Sweet's Syndrome UK in reply to muffitt]

Thank you, Muffitt.

I'll leave a message for Kristin.

[carenf in reply to muffitt]

Hi Muffit

Are you local to London? I live in Kent and I too go up to Kings  hospital in London but have found recently even they are not interested unless I have something to show them on my skin. The sweats are horrendous and I am experiencing a lot of other symptoms that nobody is interested in. I am generally a happy upbeat person and want to stay like that but having sweets has its challenges doesn't it. If you want to chat then please feel free to contact me. Caren 

[muffitt]

Hi Carenf - I am so happy to hear from you as I have never met a Sweets' sufferer before!  I have a very hectic next few days, but I promise to get back to you over the weekend.  I live in West Sussex so no distance problem re:London.  You sound to be having the same situation as me.  I will get back to you.  Take care and rest!

Muffitt x

[muffitt]

Hi Caren - sorry not to have got back to you sooner.

I was finally diagnosed with Sweets last November following nearly a year with gp having no answers.

There was a slow build up of skin problems for a couple of years previous, ending up with lesions on my face.  Along with  these I had been experiencing terrible sweats, nausea, joint pain and total exhaustion.  There was a point last summer when I hardly left my bed for 7 weeks.  I lost a stone and a half in a year (lovely!).  

When I finally saw a specialist who recognised the condition I was put on Tetrycycline, no good, then Dapsone, no good, then the steroid Prednisolone.  This cleared up my skin completely.  I started on 40mg a day and have slowly decreased it down to 5mg a day, which controls the skin and has made me feel much better and, although I have bad times, I am more able to function.  The steroid brings it's own side effects sadly (put all the weight back on and more!)  I still get the sweats and nausea, but mildly.  I can so see what you are feeling and how awful it is.  What other symptoms are you getting?  

As I  am still unwell, although not as bad as last year,  I have been sent to see a specialist  (Imperial College) at Hammersmith Hospital, who is trying to get gp to run several (very expensive! so query gp agreeing?!) scans, tests, regarding vasculitis and/or other internal blood vessel/organ issues to check if there are any underlying problems, not necessarily related to Sweets.  I am due to have a throat ultrasound tomorrow as  I have had a lump in my throat and a sore chest for about 3 months.

Please get back to me and let me know how you are. 

Take care, Muffitt

 

     

[guitargirl3]

The hardest part for me with having ss at first was the leisons,painful and working with the public.   2/ biggest fear was cancer, had tests done which were good. Now frusturated with exhaustion and feet pain. The left ankle the last couple days and this morning my fingers on both hands feeling tingly and numb it was wierd.   3/ not limited i guess i just go through everyday like a new one get up and make myself go to work. But once im home im done..  4/ When first diagnoeed which took awhile my GP sent me to a Dermatologist as he didn't know anything about it. But the Derm gave me cream and such, it cleared my SS that was 3 years ago. I am trying to educate myself and my GP. he is willing.  5/

[Shell567 Administrator Sweet's Syndrome UK in reply to guitargirl3]

Thank you, guitargirl13. I'll pass the information on.

[REVIN4GOD]

If you would like to help Kristin, please answer the following questions:

1. What was/is the hardest part of having Sweet's syndrome?

Not having answers. No one I have seen has ever dealt with a Sweet's patient. Fatigue and joint pain (mostly both hips) are my biggest issues.

2. What were your biggest fears/frustrations?

Biggest fear, cancer/multiple myloma. My father died of multiple myloma and one of the first things I was told upon diagnosis was that Sweet's could be a precursor to blood cancers and leukemia. Biggest frustration, no credible, knowledgeable doctor in my area.

3. Physically, was/is it limiting in any way?

I have about two "bouts" a year. These bouts last 10 - 15 days. During those bouts I have no energy and ache all over. I was diagnosis-ed in September of 2010 and for the two years the bouts are shorter in time but stronger in pain. Plus over the past two years the hip pain has been pretty much constant. 

4. Did you get the appropriate care you needed from healthcare professionals?

No.

5. Were they able to answer any questions you had?

No. Other than they feel my diagnosis is "classic" of the three forms.

Ron Fleming

Tulare, Ca.

[Shell567 Administrator Sweet's Syndrome UK in reply to REVIN4GOD]

Thanks Revin4God, I'll pass the information on.