Is there help in London? None in Toronto!!!: I'm in... - LSN


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Is there help in London? None in Toronto!!!

bleusblue2 profile image

I'm in Toronto. My friend has primary lymphedema (sp?). There is no real help for her. Info here says things like:"seek trained therapists" Her own doctor doesn't do that. No help at all. She has hard spots, pain night and day. Emergency doesn't know what to do ... if we did GoFundMe could we send her to London for help?

10 Replies

There is help in Canada - I have sent you a PM with info.

bleusblue2 profile image
bleusblue2 in reply to Lynora

thank you so much Lynora -- I forwarded info to my friend just now

Hello my sister Canadian, you’re being a lovely friend trying to find help for your Lymphie friend. I previously lived in Toronto and have lived near London for the past 20 years (dual citizen). Luckily you don’t need to fly over here for treatment. Toronto does have good LE services including for Primary LE which is also what I have I know of lymphies that say good things about LE clinics in Markham and Newmarket.

If you contact the Lymphatic Education & Research Network/ LE&RN (an international Lymphie charity based in NYC) they can signpost you to services in Toronto. They have a growing list of LE centres of excellence, and they’ll give your friend advice how to find a certified lymph therapist. There is also a therapist search feature/advice on their website. There is a Canadian chapter of LE&RN, I believe the chair lives in Ontario. The local LE&RN chapters are quite knowledgeable about local services

All the best, Catherine x

bleusblue2 profile image
bleusblue2 in reply to CCT67

Dear Catherine -- you have all answered so quickly Thank you. I'm forwarding and asking her to look at this forum.

The top man in UK is Professor Mortimer, he is based at St George’s Hospital Tooting about 20 min on tube from Central London. He also works at private clinic in Wimbledon which is near tooting. hospital referral is through our gp’s so unfortunately the way through is private through Parkside clinic. I suppose the best thing is to email the hospital there is a link on their website bottom of main page and ask how to contact his secretary etc. As they provide various services and have different consultants. sorry site address didn’t copy as a link. I was diagnosed primary in 1986 in st Thomas’ before services moved. Hope this helps good luck. Unfortunately lymph treatment here is limited too but once in is very good it’s just the red tape and limited funding in different areas of the country. Gp’s here don’t really know what it is and unfortunately they concentrate on secondary after cancer treatments not us who are hereditary etc.

bleusblue2 profile image
bleusblue2 in reply to Leg86

Hi "leg86"! Thank you -- I'm forwarding and I hope my friend, diana, will look in here too.

CCT67 profile image
CCT67 in reply to bleusblue2

Currently prof is only doing virtual appointments

Of course all clinics are shut. I have my local appt on Friday by phone with local therapy nurse unfortunately as ideally I need a measure up. Unfortunately we have to get through this world wide pandemic but hopefully we can start to get the care we need soon.

Perido profile image
Perido in reply to Leg86

Better a phone appointment than nothing. My local lymphoedema clinic isn't offering any service at all; I'm told that all the staff have been redeployed in response to the covid crisis. I have secondary lymphoedema; I'm still in the follow up period of my cancer treatment and I had a phone appointment with my specialist cancer nurse recently. The nurse said she will contact the lymphoedema team to ask what the plans are as she is getting more enquiries about undiagnosed/untreated lymphoedema symptoms from her post treatment cancer patients.

Hi further to my last comment above. I know 2 Lymphies who obtain their treatment here/link. They are located at Yonge & Danforth. Patients have excellent things to say about it then.

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