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Patient Stories

Hear from real patients as they share their experience about being on CUVRIOR.

Hear from real patients managing Wilson disease with CUVRIOR

For patient ambassador Ginta, living with Wilson disease is part of her everyday journey. Learn how she manages her condition with CUVRIOR.
Ginta is a real patient who has been compensated for her time.

GINTA

Dedicated Nurse, Avid Traveler, Animal Lover
Meet Ginta, a patient ambassador who is living with Wilson disease. A natural caretaker, she has had to learn to take care of herself first before taking care of others.
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Caring for others is something I feel, live, and breathe each day. The “don’t give up” fighting spirit that I try to instill in my cancer patients is something that I’ve had to discover in myself when I unexpectedly was diagnosed with Wilson disease.”

Ginta smiling
Ginta family
Ginta with dog
Growing up, I’ve always felt compelled to care for others, whether that was family, friends, or my beloved dogs. It was only natural that I would decide to become a nurse. Caring for others is something I feel, live, and breathe each day. The “don’t give up” fighting spirit that I try to instill in my cancer patients is something that I’ve had to discover in myself when I unexpectedly was diagnosed with Wilson disease.

EARLY SYMPTOMS AND DIAGNOSIS

The symptoms all started in 2016 when I was under a lot of stress in nursing school. I was feeling anxious, depressed, and getting migraines that I thought were related to the pressures of school. Then I began having a tingling sensation in my feet along with severe nausea, poor coordination, involuntary muscle contractions, drooling, and droopy eyelids. My hands were constantly shaking, making it hard to write. Simple things like swallowing food and drinking water both became difficult. I really started to worry when my posture began tilting due to dystonia. As my neurological movement issues got worse, I was too scared to see a doctor to find out what was wrong.
How I learned about Wilson disease was a stroke of luck. I took a drive to clear my mind and I happened to stop at an eye clinic to get new glasses. The optometrist noticed there were Kayser-Fleischer copper-colored rings around the corneas of my eyes, which are a key sign of Wilson disease. After my parents learned about specialized Wilson disease clinics called Centers of Excellence, I immediately made an appointment and began seeing a team of doctors.

TREATMENT

In determining a long-term treatment plan, I spoke to my doctor about available options. He recommended CUVRIOR and explained it is a twice-daily treatment for Wilson disease that helps maintain copper balance in adults with stable disease who are de-coppered and tolerant to penicillamine. We reviewed common side effects, such as abdominal pain, change of bowel habits, rash, alopecia, and mood swings. He stressed the importance of regular monitoring to evaluate my copper and iron levels, which would include lab tests and follow-up visits.
I was excited to hear that CUVRIOR didn’t require refrigeration and came in a portable blister pack since I enjoy traveling and being active outside. CUVRIOR’s patient support program allowed me to start my new treatment quickly. A dedicated care coordinator helped me with my insurance coverage and followed up regularly to make sure I got my refills on time. I have been on CUVRIOR for two years now – I am happy to say that CUVRIOR seems to be working for me, and my Wilson disease remains stable.

LIFE TODAY

My journey with Wilson disease hasn’t been without challenges, but I’m determined to live as positively as I can. It has taught me a lot about myself – how strong and resilient I can be if I put my mind to it. That means learning to be patient, knowing when to rest, and devoting time to caring for my whole self. This allows me to be there for others.
As I look ahead, I plan to travel more and explore the great outdoors. I hope to also spend more time on my favorite hobbies like yoga, gardening, cooking, and reading.
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Qualified candidates will be compensated for their involvement. Not all candidates will be selected to participate.

INDICATION

CUVRIOR is a prescription medicine used to treat adults with stable Wilson Disease who are de-coppered and able to take penicillamine. Wilson Disease is a condition where the body stores too much copper. CUVRIOR is a chelating medicine which binds copper in the blood stream and eliminates it in the urine to help reduce excess copper in the organs.

IMPORTANT SAFETY INFORMATION

  • Do not use CUVRIOR if you are allergic to trientine or to any of the ingredients in CUVRIOR.
  • Your Wilson Disease symptoms could get worse when you start treatment. This could happen because too much copper is removed from the body in a short period of time. Your doctor may need to reduce your dose or stop CUVRIOR treatment.
  • Copper deficiency may develop following treatment with CUVRIOR. Your doctor will do tests to monitor your urine and blood for copper.
  • Iron deficiency may develop while taking CUVRIOR. If this happens, your doctor may tell you to take iron supplements for a limited time.
  • Allergic reactions, such as a rash can occur. If a rash or other allergic reaction occurs, contact your doctor immediately or get emergency help.
  • The most common side effects are pain in the abdomen, change in bowel habits, rash, hair loss (alopecia), and mood swings.

Take CUVRIOR at least 1 hour apart from any other oral medicine. Tell your doctor about all the medicines you're taking, including over-the-counter medicines, vitamins, and herbal supplements. Avoid taking supplements when taking CUVRIOR. Taking CUVRIOR with mineral supplements (e.g., iron, zinc, calcium, magnesium) can reduce the effectiveness of CUVRIOR. If iron supplementation is necessary, take CUVRIOR at least 2 hours before or 2 hours after taking iron; for other mineral supplements (e.g., zinc, calcium, magnesium), take CUVRIOR at least 1 hour before or 2 hours after. Do not start or stop any medicines while taking CUVRIOR without talking to your doctor.

These are not all the possible side effects of CUVRIOR. You are encouraged to report negative side effects of prescription drugs. Contact Orphalan at 1-800-961-8320 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.

Please see full Prescribing Information.

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INDICATION

CUVRIOR is a prescription medicine used to treat adults with stable Wilson Disease who are de-coppered and able to take penicillamine. Wilson Disease is a condition where the body stores too much copper. CUVRIOR is a chelating medicine which binds copper in the blood stream and eliminates it in the urine to help reduce excess copper in the organs.

IMPORTANT SAFETY INFORMATION

  • Do not use CUVRIOR if you are allergic to trientine or to any of the ingredients in CUVRIOR.
  • Your Wilson Disease symptoms could get worse when you start treatment. This could happen because too much copper is removed from the body in a short period of time. Your doctor may need to reduce your dose or stop CUVRIOR treatment.
  • Copper deficiency may develop following treatment with CUVRIOR. Your doctor will do tests to monitor your urine and blood for copper.
  • Iron deficiency may develop while taking CUVRIOR. If this happens, your doctor may tell you to take iron supplements for a limited time.
  • Allergic reactions, such as a rash can occur. If a rash or other allergic reaction occurs, contact your doctor immediately or get emergency help.
  • The most common side effects are pain in the abdomen, change in bowel habits, rash, hair loss (alopecia), and mood swings.

Take CUVRIOR at least 1 hour apart from any other oral medicine. Tell your doctor about all the medicines you're taking, including over-the-counter medicines, vitamins, and herbal supplements. Avoid taking supplements when taking CUVRIOR. Taking CUVRIOR with mineral supplements (e.g., iron, zinc, calcium, magnesium) can reduce the effectiveness of CUVRIOR. If iron supplementation is necessary, take CUVRIOR at least 2 hours before or 2 hours after taking iron; for other mineral supplements (e.g., zinc, calcium, magnesium), take CUVRIOR at least 1 hour before or 2 hours after. Do not start or stop any medicines while taking CUVRIOR without talking to your doctor.

These are not all the possible side effects of CUVRIOR. You are encouraged to report negative side effects of prescription drugs. Contact Orphalan at 1-800-961-8320 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.

Please see full Prescribing Information.

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