Hep C support groups on Facebook are an important resource for people with Hep C

Hep C Support Groups

One of the most important things for people who have Hep C is to find a Hep C support group that will help them through the shock of learning they have Hep C through to getting treatment and then into the post-treatment, post -Hep C, recovery phase.

This became clear to me when I first learned that I had Hep C in 2014. I knew nothing about Hep C, nothing at all. My doctor knew a little more than me, enough to get me tested, but, whilst he was a good doctor his knowledge of Hep C was pretty limited and, in some cases, completely wrong.

So I went online to look for information and soon found that there were online Hep C support forums and Hep C support groups on Facebook.

I joined the biggest Facebook Hep C support group at the time, Hepatitis C Family and Friends, but I was soon banned from it because I used generic Sovaldi as treatment and then began advocating for generic Hepatitis C treatments.

That led me to form my own Facebook Hep C support group, Hepatitis C Treatment Cure and Community, which grew rapidly to be a dynamic and supportive environment for people with Hepatitis C.

Whilst aI started this group it is the members and a dedicated Admin team that maintain it.

Today I would like to share an email thread that began in July 2020 and ends today. This series of 3 emails shows how important peer support is for people with Hep C. The fact that people can talk to other people who have done Hep C treatment and regained their health after the Hep C is removed gives hope and insight to people suffering the terrible effects of chronic Hep C. Peer group information is also “real world” and acts as a balance to some of the misinformation that surrounds Hepatitis C infection.

Hep C Support July 2020

From: ######
Sent: Thursday, 2 July 2020 6:10 AM
To: gregjefferys@outlook.com
Subject: Thank you

Dear Greg

I wanted to thank you for the comfort of your online presence over what has been a very difficult last few weeks for me.

I am an English woman of your age who has just been diagnosed with Hep C that I must have been carrying for decades. I’ve been fit and healthy all my life, passed loads of medicals, had a family and held down some tough but exciting jobs. So just after retiring a couple of years ago, I thought nothing of an itch here and there which turned into a persistent problem, hence blood tests and my shock diagnosis. I had an ultrasound scan a month ago which I was told showed no liver issues but after a fibroscan last week I find that I have cirrhosis pretty much at the level that you had at your diagnosis. I was shattered to find this out and went into a tailspin from which I am just emerging, thanks to the support of family and friends.

I am lucky in that the UK National Health Service is providing me with the DAA drugs I need but terrified about the level of damage I have to my liver. I’ll be following your advice – I’ve always eaten super healthily and exercised and I love tending my London garden (although I won’t be stripping off my shirt for the Vit D!)  – my only vice has been good wine, which of course has now stopped forever.

My specialist said he thought that my liver could improve with time. But the online information about dealing with the damage once the virus has gone is very depressing. So I am really grateful for your sharing of your own positive progress, which I hope to be able to replicate. I am also very admiring of your buyers’ club activities for people without access to the medication and wondered if you have a charitable foundation or another mechanism for funding it, as I would like to contribute.

Best wishes from rainy London

#######

My Reply

From: greg jefferys <gregjefferys@outlook.com>
Sent: 02 July 2020 01:10
To: ########
Subject: RE: Thank you

Hi ######

Thanks for writing to me.

Firstly, let me assure you that your liver will make as close to a 100% recovery as is imaginable.

Previous science on the recovery from cirrhosis was seriously flawed and the stuff online is not reliable.

In real-world terms, I know numerous people who had terrible cirrhosis who made a full recovery and went from F4 to F1 or F0.

To be frank F1 is as good  anyone who is above 50 years old could expect.

I know people whose liver was so damaged by Hep C they were on the liver transplant waiting list and expecting to die soon if they did not get a transplant.

Those same people got rid of the Hep C and are now F1 and no cirrhosis.

But it takes a while. I went from F4 to F1 in about 3 years.

Now let me mention wine 😊 .

I also love a nice glass of red wine.

I stopped drinking completely as soon as I learned I had Hep C and for about 9 months after the end of treatment.

Then I started up again with a few glasses of wine a week. Never more than two in a session.

Nowadays I have 5 or 6 glasses a week. My liver handles it fine.

Once your liver has got rid of the Hep C and has healed itself it should be able to handle a glass of wine without any problem.

So get a Fibroscan every 6 months or so and watch your liver heal.

Not saying you must drink wine but my reasoning was that I have around 20 years left in this life, whether I have a glass of wine or not. Whether I take my kayak down a river or not. Whether I go bushwalking or not.

Something is going to kill me in the next 20 or so years and so I am going to enjoy those next 20 or so years to the maximum.

Best wishes

Greg

Hep C Support November 2020

Hi Greg

I found your email, your blogs and your Facebook Hep C Support group very reassuring during my recent three months’ treatment with Zepatier on the UK’s NHS. I haven’t been a poster on your Facebook group’s pages but have been an avid reader and admire the work and dedication that you put into the support you give people like me.

I think that the best thing you did for me was give me hope at a time when all I knew was despair, so, by way of thanks, I have donated to your fund and would be happy to explore other ways to support your work further.  I also wanted to share my remarkable progress, which I am very happy for you to share anonymously on any of your forums if you think it would help anyone.

My diagnosis at 64 last spring was a shock and I still don’t know how I caught the virus but have probably had it for three decades, from backstreet ear piercing in the US, person-to-person transmission or 1960s mass vaccinations or dental treatment. Anyway, it didn’t stop me enjoying a busy life and all sorts of good things, including having a wonderful family and a successful career while finding time for my hobbies of gardening, growing cooking fresh food, entertaining and drinking good wine, keeping reasonably fit and all that London – my home town – has to offer by way of art and interest. When I was diagnosed, my only symptoms were tiredness and itchy skin although my liver enzymes were very high, my platelets quite low, my kPa nearly 16 and my CAP nearly 300. I felt very afraid and could not source any advice – my hepatologist doesn’t say very much – until you advised me how to eat and exercise while I was getting treated. After three months of treatment with only occasional headaches as a side effect, I am undetected (waiting for my SVR12 in January), my kPa has reduced to 6.8 and my CAP to 240! I had no idea that F4 could reduce to F1 so quickly and I feel as if I have been granted a new life. The platelets are still a bit low but I am told that these should improve with time. I am so grateful.

So thank you, Greg. You have been an immensely important part of my recovery so far. If you need any help here in the UK, let me know. 

Best wishes

######

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