Sezary Syndrome

[Mild-Rover]

Does anyone know if there is a support group specific to this (Sezary Syndrome). Any info welcomed, thanks in advance.

[lankisterguy Volunteer]

Hi Mild-Rover

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For UK info you may be able to get advice from

lymphoma-action.org.uk/supp...

macmillan.org.uk/cancer-inf...

cancerresearchuk.org/about-...

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also HAIRBEAR_UK who works for

healthunlocked.com/leukaemi...

or healthunlocked.com/non-hodg...

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You are probably aware that there are three closely related lymphomas:

my.clevelandclinic.org/heal....

Mycosis fungoides and Sézary syndrome are types of CTCL (cutaneous T-cell lymphoma).

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I actually have suspected Mycosis Fungoides or Sézary but repeated tests have not confirmed or denied it after many years.

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Here is a link to the USA org -

clfoundation.org/sezary-syn...

And I found this info about online support groups ( I realize you are in the UK, but my New York City CLL support group has a steady member from London via Zoom)

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clfoundation.org/upcoming-e...

NETWORKING GROUPS - ONLINE MEETINGS

Meeting others who are affected by cutaneous lymphoma can be an important part of building a support network. The Online Networking Groups are be open to all patients, and family and friends of patients regardless of location. Registration is required and space is limited. Please note, meeting times are U.S. Eastern Time Zone.

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Upcoming Meetings

December 1, 2020 - 7:00 - 9:00 pm ET

January 5, 2021 - 7:00 - 9:00 pm ET

February 2, 2021 - 7:00 - 9:00 pm ET

March 2, 2021 - 7:00 - 9:00 pm ET

To register for an upcoming meeting: Register Online surveygizmo.com/s3/5801999/...

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If you have any questions, please contact the Cutaneous Lymphoma Foundation at [e-mail] or [phone]

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Len

[Mild-Rover in reply to lankisterguy]

Thanks a million for your response and all these links. I’m actually asking for a person who is not (yet!) on HU, so I’ll pass on the info. Cheers..