Has anyone been seen by a doctor who has knowledge of Sweet's syndrome?

[Shell567]

[Shell567 Administrator Sweet's Syndrome UK]

Orphanet mentions a Mr Risto HEIKKINEN (Finnish Central Organisation for Skin Patients).

Address: Karjalankatu 2 B, 3rd floor

00520

HELSINKI

FINLAND.

E-mail: [e-mail]

Phone: [phone]

Fax: [phone]

Orphanet link: orpha.net/consor/cgi-bin/Su...

[Shell567 Administrator Sweet's Syndrome UK]

Dr. Lisa Drage (dermatologist) at the MAYO CLINIC in MINNESOTA, USA.

She also specializes in connective tissue diseases, vasculitis, erythema multiforme and infectious diseases.

The Mayo Clinic has been recommended on more than one occasion.

Mayo Clinic: mayoclinic.org/bio/10465472...

[Froggie]

Dr. B. Ramsey Consultant Dermatologist @ Regional Hospital, LIMERICK, REPUBLIC OF IRELAND. This is the doctor who diagnosed my sweets having seen one other case some years previously.

[Shell567 Administrator Sweet's Syndrome UK]

Thanks guys x

[twins1803]

My dermatologist diagnosed me on sight, but I am not too sure if he knows any more yet. Seeing him tomorrow - Dr Thakaram in Borough Green, KENT, ENGLAND, UK.

[jerrybelle]

GP: Dr Sharyn Dimmick, Pacific Family Medical Practice, Calamvale, QUEENSLAND, AUSTRALIA, 07 37112280.

Dermatologist: Dr CT Lee, Specialist Centre McCullough St Sunnybank, QUEENSLAND, AUSTRALIA.

20 yrs working with Sweets Patients.

Optometrist Stuart Mcfarlane, Wembley Road, Woodridge, Logan City, QUEENSLAND, AUSTRALIA.

[Shell567 Administrator Sweet's Syndrome UK]

Thanks guys! The more doctors we locate with knowledge of SS the better.

[Shell567 Administrator Sweet's Syndrome UK]

Dr. Kenneth Greer, University of Virginia, Charlottesville, VIRGINIA, UNITED STATES.

[Dabdef in reply to Shell567]

I contacted Dr Greer a few months ago and he was not helpful at all. He stated that any doc could handle this and this disease was not that complicated.

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

Thanks Dabdef. We'll try and find some other docs in Virginia.

[Shell567 Administrator Sweet's Syndrome UK]

Dr. Ian McColl, John Flynn hospital, Tugun, QUEENSLAND, AUSTRALIA.

YouTube Vid by Dr. McColl: youtube.com/watch?v=2QYTgII...(Not working as expected?)

[Shell567 Administrator Sweet's Syndrome UK]

Dermatologist with experience of Sweet's syndrome: Dr. Niall J E Wilson.

Broadgreen Hospital,

Dermatology Services,

Thomas Drive,

LIVERPOOL,

MERSEYSIDE,

UNITED KINGDOM.

Phone: [phone]

[Shell567 Administrator Sweet's Syndrome UK]

Professor Peter von den Driesch at the University of STUTTGART, GERMANY. Researcher at the Centre of Dermatology.

[burlp1401]

My treatment of methotrexate was recommended by Professor von den Driesch after I contacted him by email. My initial diagnosis was made by Dr Damien Pryce - Consultant Dermatologist at Musgrove Park Hospital, TAUNTON, SOMERSET, UK. He knew all about Sweet's and indeed Professor Sweet. Still recommending people go to Dr Pryce wharever their skin condition.

[Shell567 Administrator Sweet's Syndrome UK in reply to burlp1401]

I've just been informed that Dr. Damien Pryce has retired, but it might still be worth considering a dermatologist at Musgrove Park Hospital for SS treatment.

[burlp1401 in reply to Shell567]

Hi, yes but dermatology at Musgrove is severely reduced now for most cases except cancer referrals. You would now need to travel to either Exeter or Bristol unfortunately.

[Shell567 Administrator Sweet's Syndrome UK in reply to burlp1401]

Thanks for the update, burlp1401. x

[Shell567 Administrator Sweet's Syndrome UK]

Thanks a lot, burlp. Every name that we add to the list helps. x

Here's another to add to the list: Consultant Dermatologist Dr. Boyle, Musgrove Park Hospital, TAUNTON, SOMERSET, UK.

[Shell567 Administrator Sweet's Syndrome UK]

Dr. Robert Swerlick, Dermatologist.

The Emory Clinic (UNITED STATES).

Areas of Clinical Interest: Autoimmune disease, Eczema, Thrombotic disease, Vasculitis.

Office(s) Locations:

The Emory Clinic at 1525

1525 Clifton Road, NE

ATLANTA, GEORGIA 30322

[phone]

emoryhealthcare.org/physici...

[Shell567 Administrator Sweet's Syndrome UK]

Dermatologist: Dr Peter Demos, 125 Liberty Street #202 Springfield, MASSACHUSETTS, US.

Tel: [phone].

OR

701 Enfield St, Enfield, CONNECTICUT 06082, US.

Tel: [phone].

[Shell567 Administrator Sweet's Syndrome UK]

1. Dr Joanne Willoughby, Dermatologist.

#211 - 83 Dawson Rd, Guelph, ONTARIO, CANADA. N1H 1B1.

Tel: [phone].

2. Dr. Afsaneh Alavi, Dermatologist.

250 Harding Blvd. W. Suite 312, TORONTO, CANADA.

Tel: [phone].

3. Dr. Regine Mydlarski, Dermatologist, ALBERTA, CANADA.

[Shell567 Administrator Sweet's Syndrome UK]

1. Dr. Joseph Jorizzo, Dermatologist, NEW YORK, NY, US (UPDATE: now at Wake Baptist Forest Health, Winston-Salem, NORTH CAROLINA, paediatric dermatology).

2. Dr. Julian Decter, Oncologist, NEW YORK, NY, US (added 1/06/18): health.usnews.com/doctors/j...

[Shell567 Administrator Sweet's Syndrome UK]

1. Dr. Austin Kulasekararaj, Consultant Haematologist, Kings College Hospital, LONDON, UK.

2. Dr. Tanya Basu, Consultant Dermatologist at KING'S COLLEGE HOSPITAL, LONDON, UK.

3. Professor Ghulam Mufti – Head of the department of Haematology at KING'S COLLEGE HOSPITAL, LONDON, UK. He is one of the main international specialists on myelodysplastic syndromes (UPDATE: retired Sept 2020).

Telephone: [phone].

E-mail: [e-mail]

If you have developed your Sweet's syndrome secondary to MDS, please join 'MDS UK Patient Support'. mdspatientsupport.org.uk/

[Shell567 Administrator Sweet's Syndrome UK]

Dermatologist - Dr. Alyson Bryden at Ninewells Hospital, DUNDEE, SCOTLAND, UK.

[Shell567 Administrator Sweet's Syndrome UK]

1. Phillip R. Cohen, MD.

UC San Diego Dermatology Clinic in the University Pacific Center Building,

8899 University Center Lane Suite#350,

SAN DIEGO, CA 92122 (UPDATE: states that clinic is closed, 4/10/20).

Link: healthsciences.ucsd.edu/som...

2. Dr. George Yaghmour, Haematologist, LOS ANGELES, CALIFORNIA, USA: health.usnews.com/doctors/g...

[REVIN4GOD in reply to Shell567]

Is the a temporary close due to COVID? I am about 6 hours away, but would be willing to do the drive to get some help. I was diagnosed in 2010 and tried of getting no help from the dr. up here.

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

Hi REVIN4GOD, just checked and the clinic is now open.

UC San Diego Health healthlocations.ucsd.edu/la...

Philip R. Cohen, MD medschool.ucsd.edu/som/derm...

[grannyjones]

Is there any in Adelaide south Australia, I think its better to find one you can have a good patient Doctor relationship but my Doctors Surgery have no idea, it was a skin specialists that picked it up by the sore which spread across the top of my hand, anyone that can help out there please.

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

Hi Grannyjones,

I'll leave a message on our Facebook group to see if anyone knows of a doctor in Adelaide.

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

There is a dermatologist named Dr. Kate Newland who works at ROYAL ADELAIDE HOSPITAL and Flinders Medical Centre, SOUTH AUSTRALIA. She has co-authored a paper on Sweet's syndrome, so should have some knowledge of SS: dermatologysa.com.au/our-de...

[Shell567 Administrator Sweet's Syndrome UK]

UK Dermatologist Dr. Mahmud Ali: westernsussexhospitals.nhs....

St. Richard's Hospital, Chichester, West Sussex and Worthing Hospital, Worthing, WEST SUSSEX, ENGLAND, UK.

[Shell567 Administrator Sweet's Syndrome UK]

Dr. Ilicia Shugarman, Haematologist in JACKSONVILLE, FLORIDA, USA: health.usnews.com/doctors/i...

[Shell567 Administrator Sweet's Syndrome UK]

Dr. Eghrari-Sabet, Allergist-Immunologist, ROCKVILLE, MARYLAND, USA: health.usnews.com/doctors/j...

[Shell567 Administrator Sweet's Syndrome UK]

Dr. Steven Mays, Dermatologist, HOUSTON, TEXAS, USA: health.usnews.com/doctors/s...

[Liney1955]

My specialist is Dr Vorster at Woodlands Hospital, Kettering (NORTHAMPTONSHIRE, ENGLAND).

He knew straight away, but still did a skin biopsy. Which came back as Sweet's Syndrome.

He said it was to do with White Blood cells attacking my system.

He put me on a high dose of steriods for several weeks, also have to use DoubleBase cream daily.

I hope this is of help.

[Shell567 Administrator Sweet's Syndrome UK]

Thanks, Liney!

[CGWestview2018]

Dr. Joseph kingsmill. Mansfield notts. Uk

[Shell567 Administrator Sweet's Syndrome UK in reply to CGWestview2018]

Thank you, CGWestview.

[Shell567 Administrator Sweet's Syndrome UK]

IMPORTANT! Some of this information may now be out-of-date.

[Aladinpro]

Hi All - relatively new to the site. Currently in the UAE and seeing a Consultant Dermatologist - Thomas Berger. Not diagnosed conclusively as SS, however nothing else seems to be showing up after multiple biopsies. Flare ups every now and then. I am planning on a trip home to UK (Oxford area) in July - would anyone be able to recommend a great Dr to see and try and get some closure on this? Many thanks

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

Hi Aladinpro, see King's College Hospital, London. I'll post a message on our Facebook group to see if there are any other recommendations.

[Aladinpro in reply to Shell567]

Many thanks Shell567. Any particular doctor/specialist you suggest or recommend?

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

Dr. Tanya Basu, KCH, if you're looking for a dermatologist.

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

One FB group member has recommended Dr. Inge Kreuser-Genis, Dermatologist, Oxford University Hospitals NHS Foundation Trust. nhs.uk/profiles/consultant/...

[SweetsBoy21]

Dr. Meagan Hughes is a Pediatric Dermatologist associated with Childrens Hospital Los Angeles: chla.org/profile/meagan-hug... Sweet syndrome)

[Shell567 Administrator Sweet's Syndrome UK in reply to SweetsBoy21]

Thanks, SweetsBoy21. chla.org/profile/meagan-hug...