Introduction: Hi I decided to join after my... - CLL Support

CLL Support

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Introduction

Artycrafter profile image
9 Replies

Hi

I decided to join after my wife recommended this truly excellent resource and community.

I have recently been diagnosed with CLL and are finding this place a goldmine of advice and support.

Not really looking forward to reading more about the condition but need to understand what’s going on with my body to ask the medical professionals the right questions and calm my mind

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Artycrafter profile image
Artycrafter
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9 Replies
Spark_Plug profile image
Spark_Plug

You may want to visit the CLL Society and other well vetted organizations for videos. I understand, reading may be trying especially when this is so new to you, but in time as you become acclimated it does help to find the peer reviewed accredited reports.

General goggle, and products like ewetube are just mine fields to one's peace of mind. I'm not saying never, but the information you consume is as important as the medicines you take, and the food of your diet.

mrsjsmith profile image
mrsjsmith in reply to Spark_Plug

As Artycrafter is in the U.K. it would be the CLL Support for information.

Colette

Spark_Plug profile image
Spark_Plug in reply to mrsjsmith

Are they mirror sites? I never heard of this.

mrsjsmith profile image
mrsjsmith in reply to Spark_Plug

As far as I know they are not connected apart from a similar name.

CLLerinOz profile image
CLLerinOzAdministrator in reply to Spark_Plug

CLL Support is a patient-led UK charity whose mission is to "support and empower Chronic Lymphocytic Leukaemia (CLL) patients, and Small Lymphocytic Leukaemia (SLL) patients, their families and supporters through education and access to reliable, relevant and current information."

It also represents "CLL patients in discussions with government, pharmaceutical companies, other leukaemia charities and the National Institute for Care and Health Excellence (NICE)."

cllsupport.org.uk .

Our community here - CLL Support at HealthUnlocked - is CLL Support's international online community.

There's more information in our "About" page:

healthunlocked.com/cllsuppo...

CLLerinOz

opal11uk profile image
opal11uk

Your wife is right, it is a wonderful resource and help for those with this condition, I personally do not have it my husband does so thats why I visit this forum, the members are supportive and very informative so you should learn a lot plus it gives you a platform to ask the questions for the answers you seek. Good luck x

Nucleusman profile image
Nucleusman

if you are going to get leukaemia this is the best type to get- that was the advice a retired haematologist told me several years ago. In many cases slow developing and was told you would die with it and not from it. Latest medications work and make life as near normal as possible. So be thankful

Artycrafter profile image
Artycrafter in reply to Nucleusman

Thank you for this information. The more we are both learning about Cll the more we are coming to terms with it.

Txkate profile image
Txkate

welcome to you both! Teamwork makes the dream work!

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