Sticky Blood-Hughes Syndrome Support

What's up with this new site?

I thought I would write a post to clarify a few issues that are being brought up with regard to the platform’s upgrade.

First, we’re glad you’re here. I know it was a pretty frustrating experience for some of you to get back into the platform at the re-launch. We’re really sorry about that.

Some of the headlines-

What happened to notification emails?

When we launched there were, as many of you know, a number of technical hiccups. To better control the situation we temporarily disabled notifications. We did this to limit the amount of traffic to the site (we send over 2.5 million emails a month) in an effort to limit the number of people who might run into the bugs. These notifications will be turned on again next week (the week starting Jul 15).

Why was I having problems logging in?

We tested the system across all browsers including iPad/mobile before we launched but sometimes you can’t replicate real life, and login was unfortunately what suffered the most in this. Most of the early login problems are now fixed, but a few people may still be being logged out when they are browsing. We’ll have that straightened out soon.

Where’s my badge!? Why are my photos psychedelic/upside down? etc

Almost all of these type of issues we are aware of and on our list of fixes over the coming few days. We have had to prioritise the most urgent ones first. You can go to or email to help identify any you think we might have missed.

Where are my blogs?

As most of you have noticed ‘blogs’ have been renamed to ‘posts’. However, all the same content is still there. A lot of users told us they were daunted by the idea of blogging when they first joined the site so ‘posts’ are aimed to make it easier and more welcoming.

Some information on the bigger bugs

Can’t login with username / email - fixed

Links in activity feeds lead to an error page - fixed

Usability issues with internet explorer 10 - fixed

Links from public profile lead to an error page - fixed

Changing password from account page not working - fixed

Changing password from the ‘forgot password’ link on the login page - in process - it usually changes the password, but might tell you it didn’t.

Finally, thanks for still being here and having the faith in us to get things back on the rails.

Best wishes

5 Replies

Hi Matt,

Thank you for giving us the heads up with what's going on!

It's been a little trying to say the least, I'm glad you're gradually getting the bugs out the system, roll on another week and hopefully our members will all have found there way back!

Hugs Sheena xxxx :-) :-) :-)


Hi Matt

Thanks for the heads up. It has been very frustrating and I am worried that we do not seem to be getting many posts and questions from our members and from newly diagnosed patients, which we were getting before.



I hope these things are all ironed out swiftly, as to be honest it is very difficult - and we have some very important issues to deal with on this site. Please keep us informed. Mary F


Mary and Dave I second, or third what you are saying, posts are definitely down and I'm sure that's because those who were not aware the change was coming will feel they landed on the wrong planet when they try to get back to their old community. It's worrying as folks may ave urgent issues to deal with.


Them's are sure big hiccups with the new site I cant find anyone I used to talk to !

Mary & Jade have answered your blogg & i must say i'm pleased to see there names.....but this new site is very frustrating.

Mary is write important issues need to be dicussed & mailings are not always getting through.

Nice to see you again.......Jillymo x


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