Danny Chats Ep5. Wilson's Disease; Guest Rob Holcombe

Danny Chats Episode 5 features special guest Rob Holcombe.
In this episode Rob and I talk about our experience of Wilson's Disease and the medical health system in the USA. Rob also talks about his diet, relationship and a few other things.
If you enjoyed the video or found it interesting please give it a thumbs up and subscribe to the channel for future videos.
If you would like to join me on an episode or have any questions please feel free to message me on Facebook or Instagram. I have also added a link to my blog where I talk about my life with Wilson's Disease and where that has lead me.
Facebook: / danny.hiles
Instagram: / danny_hiles86
Blog: organtransplan...

[@gracecarter1122]

Hey, thanks for making this, it's helpful to hear other people's experiences of having Wilson's. I have Wilson's Disease and have an important message for Rob. I am fortunate to have accumulated most of my copper in my liver, rather than my brain, and have avoided neurological symptoms by taking chelating medication, Trientine (I think it's called Syprine in America). It appears this is also the case with Rob, though he takes Penicillamine. I previously wanted to transition to Zinc Acetate after my copper levels had stabilised but have since decided against this upon the advice of both Wilson's Disease specialists I have seen in the UK. If zinc works effectively, it only prevents you from absorbing copper from your diet. It can not chelate any existing copper in your body. This means, if you take it without chelating medication, it has to work 100% effectively or you will absorb copper and create a surplus. As we know, surplus copper damages our bodies and if left uncontrolled can damage our liver, kidneys, eyes, brain, joints, tissues etc. In order to safely use zinc as a stand alone treatment, you have to have very regular, accurate testing to make sure you are not accumulating ANY excess copper. The tests available for copper levels are not accurate enough to ensure this is not happening.
I was strongly advised against this treatment because Dr Dooley and Dr Tsochatzis said it is very difficult to get right and if you get it wrong, you can end up with irreversible neurological issues. As I said, we are incredibly lucky that we have manifested LIVER symptoms and not neurological ones. The liver can heal, you cannot reverse neurological symptoms of Wilson's.
I know that we are extremely lucky to live in the UK and have the safest treatment options readily available to us. I'm so sorry you do not have this in the USA. However, I would strongly suggest you continue taking chelating medication for as long as you possibly can. You are very lucky to be living a 'normal life' and this is made possible because you take chelating medication.
Thanks again for making this and to Rob for sharing his story. All the best to both of you x

[@TransplantStrong]

Thank you for this very insightful comment, I don’t know how I missed it when you originally wrote it.
I’m glad you are doing well and your right we are very lucky to be able to live on medication and for it to be able to help revers or stabilise liver damage.
I shall pass this info into Rob incase he hasn’t seen it.
Thanks again and I wish you the best health.