Wilson’s disease is a rare disease and only affects about 1 in 30,000 people around the world, which could make it difficult to meet another person who understands what it’s like living with Wilson’s. For some, connecting with others in the community has helped lead to more confidence in managing Wilson’s through added education and shared experiences.

To help you feel more empowered and connected, a few of the community’s most passionate advocates lent their voices and experiences to create videos and resources that you’ll find here. Welcome to Wilson’s Wisdom, an online resource library.

Wilson’s In Their Own Words

It may be easy to relate to others who have gone through similar experiences, particularly when it comes to a rare disease – whether that’s someone else who has been diagnosed or a caregiver who has been there to provide support.

Meet sisters Alexis and Taylor Smith, Amanda Elsts and her mother, Sue Goodwin, Ginta Ginaityte and Evan Morris – who shared their personal experiences with Wilson’s disease.

Resources

Whether you have been recently diagnosed or have been living with Wilson’s disease, there is a lot to think about when it comes to managing your health. Get information, tips and resources that can help you understand your diagnosis, engage with your healthcare team, map out your treatment options and educate your support network.

What is Wilson's?

Looking for a way to explain Wilson’s disease to friends and family? This one-pager summarizes what to know about Wilson’s, with key information on the connection to copper, common symptoms, diagnosis and treatment.

The Science Behind Wilson’s

You may know that Wilson’s disease causes copper to build up in organs, but do you know why that happens? This animated illustration breaks down the science and helps explain what’s going on in the body behind-the-scenes when you have Wilson’s disease.

Wilson’s Disease Guide

If you have recently been diagnosed with Wilson’s disease, you are not alone. This guide can help answer many of the questions you may have about living with Wilson’s disease, including ways to get support. Consider bringing this guide to your next doctor appointment as a starting point for discussion, or share it with your family and friends to help them better understand living with Wilson’s.

Wilson’s Disease Experience Map

Not sure what to expect after diagnosis? Wondering if the challenges you’re facing are common? While each person’s journey is unique, this map shows many common events and challenges faced by people living with Wilson’s disease over time and ways to get support.

For more information on WD Rx Access and your medication, please select the product you’ve been prescribed:

Cuprimine

Please click here for full Prescribing Information for CUPRIMINE (250mg), including Boxed Warning regarding the risk of toxicity.

Scroll below for Important Safety Information.

Syprine

Please click here for full Prescribing Information for SYPRINE (250mg).

Scroll below for Important Safety Information.

INDICATION FOR CUPRIMINE

Cuprimine® (penicillamine) capsules are used to treat Wilson's disease (a disease where there is too much copper in the body), cystinuria (a disease where an excess amount of certain proteins are in the urine) and in patients with severe, active rheumatoid arthritis who have not had a response to other therapy. Not enough evidence is available to see an effect on treatment of ankylosing spondylitis.

IMPORTANT SAFETY INFORMATION FOR CUPRIMINE

WARNING: You should be under the close supervision of your doctor when you are taking Cuprimine. Report any side effects promptly to your doctor.

  • Do not take Cuprimine if you are pregnant unless you are taking Cuprimine to treat Wilson’s disease (too much copper in the body) or cystinuria (too much protein in the urine). Mothers on therapy with penicillamine should not nurse their infants.
  • Cuprimine can cause serious blood disorders, and some can be fatal. If you have had aplastic anemia (anemia due to lack of all blood cells) or agranulocytosis (lack of certain white blood cells) and it was related to taking Cuprimine, you should not take it again.
  • Cuprimine can cause kidney damage and should not be used to treat rheumatoid arthritis if you have a history of kidney disease. If you take Cuprimine to treat cystinuria, routine analysis of your urine may be necessary and you should have an x-ray every year to check for kidney stones.
  • Cuprimine can be associated with fatalities due to other diseases such as Goodpasture’s syndrome (an immune disease that attacks the lungs and kidneys) and myasthenia gravis (an immune disease affecting the muscles). Your doctor may order blood analysis on a regular basis.
  • Cuprimine can affect how your liver works. Tests to determine how your liver is working should be done regularly.
  • Tell your doctor right away if you experience: blood in your urine, unexplained cough or wheezing, coughing up blood, shortness of breath, muscle weakness, drooping eyelids, double vision, watery blisters on the skin or other rash, fever, joint pain, swollen lymph nodes, mouth ulcers, or diminished taste.
  • Cuprimine is a drug that has many side effects, and some can be fatal. Other side effects that can occur include serious lung problems, nervous system symptoms, diseases of the skin and mucous membranes known as pemphigus, allergic reactions (including a condition known as drug fever as well as skin rashes), mouth ulcers, and loss of taste. Talk to your doctor if you experience side effects and also about possible side effects that could occur. Ask your doctor or pharmacist for product labeling written for professionals for a full list of potential adverse reactions.
  • Tell your doctor about all other medicines (prescription and over-the-counter, including vitamins and herbal supplements) that you are taking. Some medicines (such as gold therapy, antimalarial or cancer drugs, oxyphenbutazone or phenylbutazone) should not be used with Cuprimine because they also may cause serious liver and kidney side effects.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

Please click here to see full Prescribing Information for Cuprimine capsules.

References

1. Gaffney D, Fell GS, O'Reilly DS. ACP Best Practice No 163. Wilson's disease: acute and presymptomatic laboratory diagnosis and monitoring. J Clin Pathol. 2000;53:807-812.
2. European Association for Study of Liver. EASL Clinical Practice Guidelines: Wilson's Disease. J Hepatol. 2012;56:671-685.
3. Cuprimine [package insert]. Bridgewater, NJ: Valeant Pharmaceuticals North America LLC; 2015.

INDICATION AND USAGE FOR SYPRINE

Syprine® (trientine hydrochloride) is used to treat Wilson's disease in patients who cannot take the medication known as penicillamine. Wilson's disease is a condition where the body stores too much copper. Syprine is not recommended to treat cystinuria (a condition where a protein known as cystine is excreted into the urine), rheumatoid arthritis, or a disease affecting the bile ducts in the liver known as biliary cirrhosis.

IMPORTANT SAFETY INFORMATION FOR SYPRINE

  • Do not take Syprine if you are allergic to it or any parts of the formulation.
  • You should remain under regular medical supervision the entire time you are taking Syprine. Your doctor should regularly check to see if you have iron deficiency anemia. This is particularly important for women.
  • Take Syprine on an empty stomach, at least one hour before a meal or two hours after a meal and at least one hour apart from any other drug, food, or milk. The capsules should be swallowed whole with water and should not be opened or chewed. For the first month of treatment, take your temperature every night, and report any symptom such as fever or skin rash to your doctor.
  • Tell your doctor if you are pregnant, plan to become pregnant, or are nursing.
  • The following adverse reactions have been reported from a clinical study: iron deficiency and a condition affecting the immune system known as systemic lupus erythematosus. In addition, the following adverse reactions have been reported in marketed use: abnormal or uncontrolled muscle contractions, muscle spasm and an immune disease affecting muscles known as myasthenia gravis.
  • Do not take mineral supplements because they may block the absorption of Syprine.

You are encouraged to report negative side effects of prescription drugs to FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

Please click here to see full Prescribing Information for Syprine Capsules.

References

1. Gaffney D, Fell GS, O'Reilly DS. ACP Best Practice No 163. Wilson's disease: acute and presymptomatic laboratory diagnosis and monitoring. J Clin Pathol. 2000;53(11):807-812.
2. European Association for Study of Liver. EASL Clinical Practice Guidelines: Wilson's Disease. J Hepatol. 2012;56(3):671-685.
3. Syprine [package insert]. Bridgewater, NJ: Valeant Pharmaceuticals North America LLC; 2014.