As January is drawing to a close, we wanted to reflect on the beginning of the year and share some exciting things that have been happening with the platform already in 2021.
To start, we would like to congratulate two of our communities for hitting momentous milestones! Fertility Network UK healthunlocked.com/fertilit... hit 30,000 members on January 10th and 8 days later, Fibromyalgia Action UK healthunlocked.com/fibromya... surpassed 50,000 members.
These are such exciting achievements and we very much look forward to seeing not only these communities, but also ALL of our amazing communities continuing to grow and provide valuable spaces to support people in the coming years.
From our side, we have been pleased that the roll out of our new feature, adding images to replies, is getting positive feedback so far! The team has loved reading your comments and can't wait until the feature is fully active across all communities so that all our members can enjoy the benefits of it too!
For some more context, we choose to release these types of changes incrementally to ensure any technical updates do not cause bugs and/or glitches, and a high quality of user experience is maintained across the platform.
We would love to hear about what brought a smile to your face this month. Please reply to this post with anything you would like to share with us that you have experienced whilst using the site that has made a positive impact on your life.
Additionally, we always appreciate your feedback! Is there anything that you would like to see from us? Perhaps you have ideas of how we can improve or ways in which help you interact with the site? If so, please email support@healthunlocked.com
All the very best,
Saskia
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SaskiaHU
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The thing that brought a smile to my face was Dec 24th got a message from our retirement community, that the Covid 19 vaccine was going to be given January 5th
Hello! I want to congratulate you on this achievement! I also want to commend you on creating a place that allows for people to come together in a supportive way. Thank you also for getting us through this pandemic. It is awful for all of us and, if it weren't for this place, I think a lot of people might be worse off than they are. You know my concerns, so I'll just leave it on the good things. P.S. the imagine icon is a really neat addition!
Hello Saskia,
Firstly well done for making us think about positivity in the face of adversity.
I love the ability to add a photo to replies and think it will transform HE as thats a perfect community for photo's in replies so I'd like to thank you and all your team for going the extra mile to enhance the features of our communities.
Whats been the highlight for me? It has to be on the Positive Wellbeing community, where we have a member who has been making posts about ongoing pain and they have now been diagnosed with prostate cancer, we offered him an artist badge as we love his art which he gleefully accepted and 7 hours later sent us a message saying can you tell that I'm glowing with pride!
This made my day and month as it makes it all so worth while getting such positive feedback.
So I'd like to thank you and the rest of the HU support team for all your hard work and us getting the great communities for free as it is very much appreciated.
I think that you should add the feature ‘hide’ like a button that people can use when scrolling and don’t want to see a specific post because maybe it’s upsetting or triggering. Posts that receive a lot of responses tend to stay at the top of the feed page for quite a long time...would be good to be able to ‘hide’ them from the homepage. Thanks!
Hi Saskia, I’ve just thought of something regarding the site. Don’t know if it’s possible but It would be useful if you had a search button for a particular question and advice. You could start to type in the query and previous suggestions relating to that would come up and you could click on to read them. Feels like a lot of questions are repeated and it gets a bit tiring to have to repeat advice, when you’ve just spent some time explaining the same thing in a previous post. Hope you don’t mind me saying thanks.
The functionality already exists - that's how the Related Posts are derived after a post is published. However, I think that often it's not a technological solution members want, but the interaction with others and validation of their concerns.
Twister, I hear you about getting tired repeating advice, which is why I wrote a post for my community explaining how to do in-community searches, then created a campaign which directs members to that post. A campaign comes up between a post and answers to the post. Members can dismiss it so it no longer appears. You create campaigns through the admin section and conveniently, you can set up a different campaign that will be seen by non-community members.
To help deal with repeated question and ansers, we recommend that you create a FAQ and Answer post and then pin it on your community so you can direct members to the post when they ask similar questions to previous ones that have already been answered. If you do have any further questions around how to do this, please do get in touch with us directly at support@healthunlocked.com for further assistance.
I can't really be bothered anymore why is everything so complicated, but thanks anyway, think I'm done.
Hi Saskia!I have a question. How do you guys deal with topics not related to this community's purpose of helping those with anxiety and/or depression?
In the guidelines it states that you allow some off-topic subjects, but try and keep it to a minimum. How do you do this (or is that not something I should be asking)? I'm curious because over the months this sense of change to a more free-for-all forum from a forum meant for a specific purpose has been brought up by a number of us.
(This is for me too since I've gone off-topic/posted off-topic before).
Gotcha. Thanks! I am a member of Anxiety and Depression; Jinny seems to be a member of another community. Apparently, I had misunderstood her question, which I thought was how to make a post to my community. Sorry to step in.
Dear HellvellaI can’t believe that you won’t allow a sufferer of Langerhans cell Histiocytosis to post on your bloody website.
I have experience of the disease and have seen experts on the disease. I know there is a dedicated team in Newcastle for LCH in adults. I attended there, had treatment there donated dendritic cells. I asked a lot of questions. I should have died because our wonderful NHS told my parents that there was nothing wrong with me for 2 years. One biopsy showed nothing. I had 2 lesions in my head. One at the top and one on my frontal bone. Had they acted straight away the lesions would not have got worse. It took my mother to insist on another biopsy and they found the disease. A telegram was sent for me to be in hospital the next day. There were only XRays then but I was x Rayed all over my body. When operated upon the surgeons had no idea what they would find and called it an enormous lesion. They put a PMMA plate in my forehead because there was nothing left of it. I was operated on January 2020 to replace the plate with Titanium and also to fix the hole at the top of my head which was overlooked. It collected rain and when I tipped my head the rain ran down my nose. The sun bore down on it giving a lot of pain and I had to wear a hat or cover it with my hand.
Initially it was named Histiocytosis type X later renamed to Langerhans cell Histiocytosis. After the first operation I had blinding headaches and cerebral fluid on my forehead, this eventually went down but came back with a vengeance many times - it was so painful. I take morphine and strong painkillers to this day. I did work and became a qualified Accountant but at age 45 had to give up my job as the pain became more intensive. I’ve seen a hell of a lot of neurosurgeons who couldn’t give a damn. At 62 years old I finally found one in Sheffield who read my notes and offered to help me. I saw a 3D model of my head and was totally shocked that my forehead was gone all the way across, up to my hairline and down to my browbone.
I’m a member of the Histiocytosis association of America. I’ve emailed the key guy in Austria, he was a pig, and I told him so. The research team are not funded like cancer and are missing part of the jigsaw so to speak. I watched him on YouTube and they seem to be struggling to find out what causes this terrible disease that can attack any part of the body. Skull, longbones, soft tissue etc. Also it can recur.
I have had a horrible life but it had to happen to someone.
You think you know it all but you don’t. The girl with the jaw is best with surgery as I was told by experts that the intervention stopped the disease. The guy with type X needs to look on the American site.
They treat it with chemo now. Glad they didn’t in my day.
Dear HellvellaI can’t believe that you won’t allow a sufferer of Langerhans cell Histiocytosis to post on your bloody website.
Lynn/Jinny455,
First, it is NOT my bloody website. I am just a member and, as it happens, an admin on another forum.
Second, I replied thinking I was being helpful.
Third, I know almost nothing about LCH and the issues you refer to. I wouldn't want you think I know anything.
Fourth, there are hundreds of individual forums across HealthUnlocked. You just happened across one that HealthUnlocked themselves use to announce, explain and discuss issues with members.
You can find all the other forums by following this link:
I tried searching for a relevant community forum but did not find an obvious one.
I wish you well but I sincerely hope I am not to be judged an awful person for the help I tried to give even if it was ultimately not as helpful as I had hoped.
Put in a search for Langerhans Cell Histiocytosis (LCH) I got it at 7 years old it still is a rare (orphan) disease. There are posts regarding this disease on this bloody website. I am 64 now and still suffering Lynn
As Helvella mentioned, this community is owned by HU and is reserved for the HU team to post news and updates to the members of the community. With this, you will not be able to post a question in this community.
If you have a question for us, please do get in touch with us directly as support@healthunlocked.com
Dear Saskia, I can’t believe that you won’t allow a sufferer of Langerhans cell Histiocytosis to post on you bloody website.
I have experience of the disease and have seen experts on the disease. I know there is a dedicated team in Newcastle for LCH in adults. I attended there, had treatment there donated dendritic cells. I asked a lot of questions. I should have died because our wonderful NHS told my parents that there was nothing with me for 2 years. One biopsy showed nothing. I had 2 lesions in my head. One at the top and one on my frontal bone. Had they acted straight away the lesions would not have got worse. It took my mother to insist on another biopsy and they found the disease. A telegram was sent for me to be in hospital the next day. There were only XRays then but I was x Rayed all over my body. When operated upon the surgeons had no idea what they would find and called it an enormous lesion. They put a PMMA plate in my forehead because there was nothing left of it. I was operated on January 2020 to replace the plate with Titanium and also to fix the hole at the top of my head which was overlooked. It collected rain and when I tipped my head the rain ran down my nose. The sun bore down on it giving a lot of pain and I had to wear a hat or cover it with my hand.
Initially it was named Histiocytosis type X later renamed to Langerhans cell Histiocytosis. After the first operation I had blinding headaches and cerebral fluid on my forehead, this eventually went down but came back with a vengeance many times - it was so painful. I take morphine and strong painkillers to this day. I did work and became a qualified Accountant but at age 45 had to give up my job as the pain became more intensive. I’ve seen a hell of a lot of neurosurgeons who couldn’t give a damn. At 62 years old I finally found one in Sheffield who read my notes and offered to help me. I saw a 3D model of my head and was totally shocked that my forehead was gone all the way across, up to my hairline and down to my browbone.
I’m a member of the Histiocytosis association of America. I’ve emailed the key guy in Austria, he was a pig, and I told him so. The research team are not funded like cancer and are missing part of the jigsaw so to speak. I watched him on itube and they seem to be struggling to find out what causes this terrible disease that can attack any part of the body. Skull, longbones, soft tissue etc. Also it can recur.
I have had a horrible life but it had to happen to someone.
You think you know it all but you don’t. The girl with the jaw is best with surgery as I was told by experts that the intervention stopped the disease. The guy with type X needs to look on the American site.
They treat it with chemo now. Glad they didn’t in my day.
I see that you just joined HealthUnlocked this week, so you are still learning how this site works.
As both Helvella and SaskiaHU have endeavoured to explain, there are lots of communities on this site - over 700 in fact. Each has a specific focus and this one is for members of the HealthUnlocked team to post about new site features. Only HealthUnlocked team members can create a new post on this community, but any of the milions of HealthUnlocked members can reply to their posts, as you, Helvella and I have done. As Helvella noted, there isn't a specific LHC community - yet, that provides support for people with, or who may have symptoms of LHC and not know about it. So here is an opportunity for you to start up a new community doing just that, if you feel so inclined. You certainly and understandably are passionate about increasing the understanding of this rare disease, but I hope that you now appreciate having an open forum where anyone can post about thousands of different health interests is not a practical way to raise awareness about just one disease.
Hidden So that we can resolve this for you, please can you get in touch with us directly at support@healthunlocked.com with more details about your issue.
Saskia. I have enough health problems without the additional stress of taking on the ruling elite at PMRGCA! The problem will be resolved when I don't renew my subs to the charity & don't look at the site! ATB Jeff
Put in a search for Langerhans cell Histiocytosis (LCH). On this site. There are posts. Why the attitude, I’ve had a few territorial replies. I got the rare (orphan) disease at 7 years old I’m 64now and still sufferingLynn
I’m out of here! There are posts regarding Langerhans Cell Histiocytosis on this site. I had pneumonia at 3 years old and had to stay with my Grandms. At 7years I had a hole in my head which was dismissed for 2 years by our wonderful NHS. I’m 64 now and have osteoporosis and arthritis. I take alendronic acid to treat the osteoporosis. I had an early menopause and have a high platelet count.Take care LYNN
I am, yes. For some reason, I thought we were on the Anxiety and Depression community and that I was telling Jinny how to post.
I am very aware that HU has many communities; I just thought for some reason that we were on mine. Sorry if I sounded selfish.
I hope you're well.
Yes, it's awful, isn't it? I've had a bundle of straw up there all week. It's hard to sift through.
Have a good day! Me and my straw-filled brain are going to start our day now.😊
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