My journey with Wilson’s Disease
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- Опубліковано 28 бер 2020
- Hello everyone, my name is Danny Hiles and this is a short video talking about my diagnosis with Wilson’s Disease and how my life had been since.
I hope this helps shed some light on what life can be like and the positives there are after diagnosis.
If you want to know more about my story here is a link to the blog I have been writing the last few months. It goes into a bit more detail and hopefully answers a few more questions.
Blog - organtransplant.home.blog/201...
Facebook - / danny.hiles
Instagram - / danny_hiles86
Danny, thank you for being willing to share your experience. I am also a Wilson’s Disease survivor, diagnosed at age 17. I live in the western US, where people are outnumbered by cattle! I will be checking out your videos!
I love that you shared the story of your diagnosis and your liver transplant. I would love to learn more about your transplant experience. Although my symptoms have been mostly neurological, I have been placed in a pool of candidates to receive a live donor liver transplant.
My son has just been diagnosed. Thank you. He will watch your videos.
Really thanks it was inspiration for sure
Nice vblogg.
I am undergoing different test now to roll out wilson disease.
I am diagnose having variant dystonia.
I’ve recently been diagnosed with Wilson’s disease and randomly came across your Instagram page. I actually laughed when you spoke about the prawns, because that happened to me when I was 10. I’m turning 26 this year. So a very late diagnosis. I live in South Africa and we’re under lockdown at the moment too, so I’m unable to go for a liver biopsy at this time. Which is honestly scaring the hell out of me. I’ve been adjusting my diet to low copper though, but I’m also gluten free because I have IBD as well. Making it very difficult. I haven’t been put on medication yet as the doctor wants to do a liver biopsy first 🤦🏼♀️. My ANA blood test also came back as positive, and the doctors think I have another autoimmune disease and they’re thinking it could be lupus. I got a lot of bad news in January and with this lockdown, I’m definitely stressing.
Bianca Rademeyer hello, glad it made you laugh even if it wasn’t for the best circumstances.
Going through diagnosis is scary enough without having to deal with a lock down and a delay on everything. I can imagine there are a lot of things you want answers to and all this sitting around must be doing your head in.
Your doing the best thing by being careful with your diet at the moment, once I was diagnosed and levels out on medication I was able to eat what I wanted again. 😊
If you want to chat or have any questions please feel free to message me on Insta.
Danny Hiles thanks Danny, will definitely send you message 😁. So glad I’ve finally found something that shares relevant info about Wilson’s. Even now the info is very limited on the internet.
I was 44 when Diagnosed. With liver presentations only, ALT was a little high.
My daughter was recently diagnosed with Wilson's disease she has autism she has a lot of anxiety do to Wilson's I found out because I took her to Natural psychiatrist she gives her zinc to help with the diagnosis and B6
Prayers !!
I have it but haven’t been back to the hospital, I should go back to get meds.
The biomarker came up in my blood test (low ceruloplasmin) and I just got a gene test. This whole thing catches me by surprise as I'm a 20 year old healthy male with zero symptoms, and this was found just on a routine blood test. Now I'm panicking because I've seen how far this disease can go. Thankfully my liver enzymes and ultrasound came back with no damage yet so if there is any Wilsons Disease I've caught it extremely early
Hi Jack! I do find it fascinating that it seems to me every Wilson's disease individual seems to have a unique story to tell about there journey with it. try not to panic, sounds like your ahead of the game, wish you all the best on your journey. it's going to be OK. can be scary at first, just do your best to stay positive!
Thanks for sharing this...Just curious cause Im a med student, did you have Keisher Fleischer rings?
Hello, yes I did. That was the final diagnosis for the Wilson’s Disease
Good
I am 49...doctors mentioned I may have it as my bloods been high since 2018 but not concerned enough to treat..am concerned so interested for everyone's opinion..they also mentioned gall stones...but I have no symptoms of either.
Few questions, 1. Did you have an mri and if so, did it show anything wrong? 2. Were your liver enzyme levels elevated?
Hello, I don’t remember having an MRI scan and I honestly can’t tell you what any of my levels were at the time. It was not something I payed attention too, my mum probably would have known.
I was just diagnosed today
Hey, that can be some tough news to get, I hope my videos help in some way. Have they said about treatment?
Interesting, What kind of tests did they do? Free copper, gene testing, ceruloplasmin levels? What side effects do you have with new liver?
From what I remember there was a 24hr Urine test to help gauge copper levels, eye tests to look for copper rings in my eyes and I had a liver biopsy to test for damage.
Now I have my new liver I have very few side affects. Mild tremors sometimes, I get itchy at times but all in all I’m very good.
Is it a blood test to diagnose Wilsons disease?
Hi Mate
My son is 7 and awaiting appointment in King’s London. How do you manage your diet. Online articles are too overwhelming. Do you have suggestions to follow
Hello, to start I kept a low copper diet while my medication was bringing my copper levels down.
If you Google “high copper food”
It will tell you all the things high I’m copper and you will then know what to avoid.
This is very important early on.
For me after a few years on the medication I was able to eat what ever I liked as long as I took my tablets.
@@TransplantStrong
Thanks man