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Anyone diagnosed with Sweet's Syndrome ?
@wvl60, I want to welcome you to Connect. I do not have experience with Sweet' Syndrome, but I did find that it is a rare skin coindition. I understand how lonely it can be when dealing with a rare disease.
Are you currently diagnosed with Sweets Syndrome?
Thank you for your reply. My wife is diagnosed with Sweets Syndrome. We are trying to find out if Mayo can confirm this diagnosis. We have seen the web page, but it doesn't mention any doctor to make an appointment with.
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@wvl60, This is an excellent question. The doctors at Mayo work closely as a team to meet the needs of each individual patient. That means that even though you will be assigned an appointment with one specialist in the appropriate department, you will have a whole team of experts involved in your care.
The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.
Appointment specialists are specially trained to match you with the provider or group that's the best fit for your diagnosis and your history.
I want to share the Visiting Mayo Clinic Discussion Group. You are invited to read and join in anywhere with any questions you think of about going to Mayo. https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/
SS is a syndrome I never heard of and when I researched on the web I was surprised at how the rash symptoms can mimic Grover's Disease, GD. Both of these skin diseases how rashes manifested in similar areas of the body and both have a common connection in many with leukemia and infection with steroid treatment which may trigger it. I have GD, had adult leukemia (now considered regressed and called pre-leukemia) and because of aspiration pneumonia required 1 week hospitalization with intensive care and bed-rest before my major outbreak of GD 4 years ago.
With GD they can biopsy, but it is not reliable if the rash is going into a dormant stage and my biopsy was negative, but in all other aspects fit the profile. My pattern was a 1 year initial breakout, then 6 months dormant and 6 months active then pattern repeats.
This is a" shot in the dark", as I am sure your specialists correctly identified it as SS instead of GD but take the time on the Mayo skin site to follow the Skin Blog- Grover's Blog. Feb 27, 2019 an idea was presented by Kimass1 which she read about on an earthclinic blog. It is the daily consuming of cilantro, a heavy metal detox which is also high in vitamin K. A crackpot idea? Well I figured it wouldn't hurt me and no other treatments help me and most of us with GD. Cilantro works for me and about 50% of others trying it. Now 51/2 months later no active rash, stopping my newest breakout which began February in it's tracts. I am simply wondering because of the similarities between SS and GD if this "crackpot" idea could help your wife, I don't believe it could hurt. We offer ideas on the Grover's site how to make our cilantro smoothie more palatable and how to store to keep it fresh for a week or how to freeze.
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