Welcome To Wilson's Community
Viewing 10 replies - 1 through 10 (of 10 total)
Are there any upcoming counselling sessions or new resources planned for WilsonsCommunity that members can join?
Living well with Wilson Disease often comes down to building consistent, healthy habits alongside medical care.
– Taking medication regularly – never skipping doses and following your doctor’s instructions closely
– Routine check-ups – keeping track of copper levels, liver function, and overall health.
– Copper-safe diet – avoiding foods high in copper (like shellfish, nuts, chocolate, and mushrooms) and using safe cookware.
– Staying hydrated – drinking enough water helps the body flush out toxins.
– Stress management – incorporating relaxation, sleep, and mental health practices such as journaling, counseling, or meditation.
– Open communication – keeping family, caregivers, or teachers/employers informed for support when needed.
These habits, while simple, can make day-to-day life much more manageable and help prevent setbacks.
Disclaimer: This is general guidance based on common experiences. For specific advice, please consult your doctor.
I usually keep it simple and relatable:
“It’s a rare genetic condition that makes it hard for my body to get rid of copper. Too much copper builds up in my liver and brain, so I take medication daily to keep it under control. It’s manageable, but I need to be careful with food, stress, and staying on treatment.”
If people are more curious, I add:
“It’s like my body’s ‘copper filter’ is broken. It’s rare, so most people haven’t heard of it — but it can affect everything from your mood to your muscles if untreated.”
Being honest but calm helps others feel informed rather than alarmed.
What lifestyle changes or daily habits have made the biggest difference in managing your Wilson Disease symptoms?
Take your treatment seriously and consistently – your life and long-term health depend on it.
Wilson’s Disease is manageable, but only with strict, lifelong adherence to medications that remove or block copper buildup, like chelators or zinc. Skipping doses or stopping treatment can lead to irreversible liver or neurological damage, even if you feel fine.
What you need to do:
Work with your doctor who knows Wilson Disease well – a hepatologist or neurologist depending on which system is affected.
Learn about your condition – knowledge is empowering.
Be patient with your recovery – it can take time to see improvement.
Ask for support—this journey is easier with help, emotionally and practically.
The biggest challenge that I faced personally was when the doctors were inconclusive on why my transaminases were raised. Standard liver tests do not point directly to Wilson’s and thus the journey was frustrating, till I got in touch with a specialist who knew Wilson Disease. The biggest challenge that I have heard from patient stories in the same because not many doctors have seen a case, since it’s rare.
Viewing 10 replies - 1 through 10 (of 10 total)
We currently offer one-to-one counselling sessions for members of WilsonsCommunity.
If you’d like to schedule a session or learn more, please write to us at info@wilsonscommunity.com, and we’ll be happy to arrange an appointment for you.