website confusion

[Jotame]

I really wish that owners of websites on the global internet would state which country they are based in. Is HealthUnlocked Australian?

[Jm954 Administrator]

HU is British Jotame.

It’s also great if members can include their country in their completed profile 😊

[Cllcanada Top Poster CURE Hero]

This has been a pet peeve of mine for years... CLL varies by country so too do treatment and trial availability and approaches.

While this forum has a high proportion of our American friends the community here tries to be global in nature. Knowing which country a patient is from would save many responders huge amounts of wasted time...

Telling a patient in Eastern Europe or Mumbai, to go to MDAnderson in Houston to see doctor X,Y, or Z is just a pure waste of time and bandwidth.

Regrettably this type of thing happens all too often, and for the patient it sets up unecessary stress... makes them think their treatment is substandard... perhaps it lags behind a bit, we see this in Canada too... BUT

We need to deal with this disease in a realist framework, not some pie in the sky, grass is greener on the other side of the world... type of response.

So please.. add your resident country to your posts or profiles... it will help everyone.

Thanks

~chris, 🇨🇦

[AussieNeil Partner Administrator]

Yes please everyone who hasn't already done so, please edit your profile to include and show your country! healthunlocked.com/profile/...

While you are helping yourself this way, consider changing your username to something unconnected to you to improve your privacy and add your country code to the end of your username, e.g US, UK, CA, AU, etc:

support.healthunlocked.com/...

worldstandards.eu/other/tlds/

Jotame, you'll find the London address of HealthUnlocked - the website owner that provides hosting for over 700 communities, including ours, in the footer of nearly every page

healthunlocked.com/about (To save space on mobile devices, you need to open the footer).

Likewise, the details of the UK based CLLSA charity behind this CLL Support online community is provided in our About page: healthunlocked.com/cllsuppo...

Neil

[Jonquiljo in reply to AussieNeil]

Good point! I wonder all the time where the person I respond to is from - it makes a difference.

It is unfortunate that all the CLL charities don't form some kind of international alliance. CLL is an international disease.

[AussieNeil Partner Administrator in reply to Jonquiljo]

Ahh but there is an international alliance that includes CLL communities- CLLAN clladvocates.net/about-us

This community's founding administrator HAIRBEAR_UK and some other community members have been heavily involved in it. Perhaps one of them could provide an update?

Neil

[Random78 in reply to AussieNeil]

so when I try to add my UK postcode it says invalid - perhaps because I live in Northern Ireland and some folk don't realise it is in the UK...the UK 4 countries are England, Scotland, Wales and Northern Ireland (not Ireland, which is also known as the Republic of Ireland or RoI)...a bit confusing I know!!! Our postcodes start with BT so maybe an administrator could fix that?

btw I had my 2nd appointment with haematologist on Monday and apparently no CLL specialists in Northern Ireland - again probably because our population is only 1.82m...thank goodness this forum exists

[Psmithuk in reply to AussieNeil]

Done (just checking!)

[UK-Sparky]

I have bought this up repeatedly with HU. A great and free service but have asked when people sign up can it automatically put the country abbreviation as a prefix. hence my tag

if all can do same it helps members understand where members posting come from and adjust responses to questions accordingly.

UK Sparky

[Random78 in reply to UK-Sparky]

great idea - however the 4 UK countries have devolved Health - and each country deals with the health of their population differently!

I will add NI to mine for that reason - but really helpful idea.

[Random78 in reply to Random78]

mmmhhh won't let me do that either...could/would the administrator please add NI to the beginning of my identity please?

[AussieNeil Partner Administrator in reply to Random78]

Sorry, admins don't have that ability. It could be that the username with NI is already taken. Try adding NI at the end.

Neil

[Random78 in reply to AussieNeil]

I cant get into it at all to edit the username...feel lime a right dope hahaha

[AussieNeil Partner Administrator in reply to Random78]

Perhaps retry on a different device? A laptop or desktop computer may be easier.

[UK-Sparky in reply to Random78]

Good Point will see if I can change mine to Eng

[RJR1]

I'm in the US and for one would hate to have someone not reply to a question I might pose because they think their info might be invalid because they live in Mumbai or Perth or Manchester.

This community provides a tremendous amount of support and encouragement to people with this disease.

Oftentimes well meaning detailed responses including strings of medical terms and numbers can be most discouraging and the information damaging if interpreted incorrectly by person posing the question. Granted many here are experts on their own condition but they are not " my Doctor " nor are they Doctors.

If a person is on this forum they are smart enough to figure out where MDAnderson or another facility is. They also likely have a treatment facility already. My Phx ( USA) Dr regularly consults with colleagues at Anderson and Tulane and Mayo and for all I know Mumbai.

An answer of encouragement or welcome or we are here for you isn't pie in the sky or a waste of time bandwidth or the grass is greener...it just might be a life saver.

A pet peeve of not immediately seeing where someone lives in the profile name seems a bit petty.

So please all...keep responding

[GMa27 in reply to RJR1]

Don't agree it's petty. Very helpful.

Actually I spend more time asking questions to help a person's post which I end up getting frustrated because it becomes very confusing due to such different treatments in different countries. I wrote long paragraphs trying to help someone, but their responses were so confusing. If I knew they were from another country right from the beginning, it would have helped. Most countries outside of USA don't use FCR IV chemo. They use pills. So my advice was useless when I realized they were taking pills. Another example was a person had a rash and was try to get information. I didn't understand why it would take over a month to see a dermatologist. I think they were from Canada. They don't get appts like we do in USA. So now if I don't see their country in their name, I save time and ask where they live. Having a person's country in their name will be so helpful.