A recent survey of forum participants had some interesting results
•66% of users have not met anyone with the same health condition as them, prior to joining HealthUnlocked
•58% of users have better interactions with their healthcare professionals after joining HealthUnlocked
•89% of users find the people they speak to on HealthUnlocked to be helpful
The community of patients supporting each other in the journey is very important and we are glad to have the opportunity to provide this meeting place for you.
Wayne
Written by
nash2
Partner
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13 Replies
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I’ve only just joined this Group but am in two other Groups & one Group is particularly active giving help & support along side some good humour!
I too belong to 2 other groups on healthunlocked one of my conditions is very rare and this group has been invaluable to me since diagnosis. It is vitally important to me to try and understand as much about my conditions and how I can help myself relieve as much pain as possible, how food and drink affect my life and what else I can try.
Life is a battle at times and making yourself aware of what's available through these groups enpowers me to be able to speak with confidence to the consultants about my conditions whereas beforehand I had to believe everything I was told, I can confidently speak about medications, where I need to be referred to and why, I am not afraid of questioning medical professionals.
So yes having these kind of groups is by far better than having to read about your conditions from medical books full of medical terminology, we are conversing with people around the world suffering from the same conditions, something I simply would never be doing living in remote Scotland UK seeing a consultant who has only 1 other person with the same condition.
These groups are absolutely my bedrock. I've had 3 different call ostomy in his many years a lot of time bed bound a lot of time and emotional turmoil social media and support groups have been a real lifesaver for me
Thank you Mariah, that is so nice of you to say. This is a hard journey and only fellow travelers really get it.
Hi
I agree with everyone else on here, the advice given by people who are suffering the same as you is fantastic. I now have the confidence to ask if I don't understand something. Thank you to everyone. Love and hugs Lynne xxxx
I love that I found this group, and the information you have shared has been really valuable. I don’t personally know anyone with nash so this group of friends I’ve never met in person are the only ones who really understand.
Glad you joined us. The interesting idea in your note is that you don't know anyone with NASH. Since 100 million people have fatty liver and 20 million have NASH it is highly likely that you do indeed know someone, they just don't know it yet either.
It is always helpful to hear of others' experiences. A question: we have been told different opinions regarding whether the condition of fatty liver (nash) can be changed with improved diet and exercise. We sure hope so, but even if not, eating healthier and getting more movement into your life helps many other things. But would like to know your (and others') opinion. Thank you.
While everyone has their own journey but I've been able to improve my situation from stage 4 to stage 3 NASH. Lots of information on our website but here is a link to a piece by my wife about the journey that might be helpful
Wayne - I too had my gallbladder removed - about one year ago - and was diagnosed with NAFLD just a week ago. I'm still so uncertain, but finding your posts has given me new hope that I can manage my condition. Thank you!
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