If you’ve just arrived here as a brand new member of Beyond Psoriasis here’s where it begins. This is your new social network for sharing knowledge and experience. It’s about connecting with others and pooling together a mixture of information, support and experience to empower and change lives. Most people affected by Psoriasis have something unique in their own life experience that can help others. Everything here is designed to help you unlock that possibility.
Back in 2007 I was a resident surgeon in a leading UK hospital. Our government was launching a series of changes to the way specialist doctors like myself were being accredited, and 99% of us felt it was a damaging step for the nation’s health, harmful both to us and future generations of patients we’d be treating. Big health institutions weren’t interested, so myself and a handful of doctors got together online. We started bringing more and more doctors into the group through the web. At first many thought we were crazy but quickly we became grassroots advocates for a generation of UK doctors, and in a couple of months we had a movement of 15,000 that provided support, inspiration and information to each other. We organized the biggest medical rally in UK history, an ongoing media campaign and, eventually, a high profile legal action. We got the health reforms radically changed for the better. See the article: bit.ly/R3tCM4
I learnt a lot about the immense power of togetherness, so when I joined forces with Jorge (our CEO) to dream up HealthUnlocked one of the main goals we shared was to make creating an online movement easier for inspired health advocates like you. From my own experience the importance of the group pioneers is the key.
That’s why you being here and reading this today is an important moment. In my experience if you can summon up the persistence to connect with other community pioneers, create some activity, and trigger the spirit of a community, there’s no end to what you will go on to achieve together.
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6 Replies
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Defo glad you did .. I know myself from when i first stubbled across heathunlocked wile doing google search of my own symptoms
Healthunlocked was most upto date with real people who was and are going threw what i was with my own illness / disease
That as proven to be of reassurance information and support Basically invaluable resource.
Also i have noticed quite a few medical websites have updated there information they hold and sites such as this and what we talk about is driving research into illness and diseases in the wider Internet community.
Could we please have a separate topic just about PsA in the topic column?
I feel like a cuckoo in the nest in the Psoriasis forum and also in the NRAS forum as I have neither psoriasis or Rheumatoid arthritis. I have been told however my inflammatory arthritis is highly likely to be PsA as family history, DIP involvement and also shoulders and hips.
I really feel for those with both conditions as trying to manage your skin with painful joints must be very difficult.
I have been very quickly 'disabled' by PsA - first sudden presentation was in May, symmetrical polyarthrits everywhere, deafness, dizziness, crashing fatigue, and in the next few weeks and months waiting for assessnpment i almost lost my job, and my relationship and therefore almost everything.
I am doing better at moment on Methotrexate Hydroxychloroquine and steroids when needed. Hoping to move to a slightly easier job with lighter workload soon.
Would really like to talk to people with PsA about their rheumatology experiences as I don't feel my team look at all my affected joints and insist on assessing me as a RhA patient - the DAS score doesn't take into account all the affected joints. The worry then is I won't score highly enough for biologics if needed before permanent damage occurs.
I am a health worker and know there are massive cuts, but its a false economy to withhold treatment that could halt a disease process in its tracks... The alternative is deteriorating so much I can't work anymore and surely thats the worst scenario for me and the state.
Totally agree with you on the PsA front, which was why when I was invited to join this group, I stated it needed to be about PsA as well as they go hand in hand together. Perhaps it the forum should already have a name change to Beyond Psoriass and Psoriatic Arthritis?
In addition newly diagnosed people would not know that Ps is the medical term for Psoriais as is PsA for Psoriatic Arthritis. And to emphasise the small 's' otherwise your talking about other diseases and illness.
Hi mirren and Georje. Absolutely! That's a great idea and we've just amended the topic list to include PsA as a topic. We're aware that PsA is a significant subset of Psoriasis that can sometimes fall between the cracks so it would be great if you could lead the topic as a sub-community within the community. We can try to find others specifically interested in PsA in HealthUnlocked to join the PsA subcommunity.
A start for the subcommunity might be to explain in a new post (with a suitable title like Psoriatic Arthritis how you got from the disorientation of those first symptoms to being more in control. Who were the best sources of info, doctors, nurses, patient organisations, websites etc. (and maybe select Psoriatic Arthritis as a post before you post).
I completely agree it would be great to spread the knowledge and tips about managing PsA.
That's really great - i asked on NRAS forum for a PsA topic but didn't get it (massive amounts of help otherwise) in on my phone so tricky to write a big post but i will soon. Thanks for listening and being so responsive!
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