My Book: The Story of Wilson Disease

I was diagnosed with Wilson Disease at age 21.

We are rare. It’s estimated that one in 30,000 people worldwide are living with Wilson Disease. I’m one of them. I was diagnosed at age 21 after developing liver failure. I’m fortunate. Doctors diagnosed the disease and treatment worked. I’ve had an exciting career as a medical and healthcare journalist. My next assignment is to write the story of Wilson Disease and I’d like your help.

Do you have Wilson Disease or love someone who does?

Tell Me Your Story.

I would love to hear about your experience. My goal is to raise awareness, help others get diagnosed early, provide information and support for those living with WD or caring for someone with WD and encourage others in their journey. Your input will help me shape the book to meet the needs of the WD community and identify people to interview who represent the spectrum of the disease.

Would you like to share your story?

Please share your story and details about yourself below. Let me know how I can reach you to follow up and get more information if needed.

Thank you for your time and your interest in educating others about Wilson Disease. I look forward to hearing from you!

An * next to the question denotes that it is a required answer.

My Book Form

First Name *

Last Name *

Street Address *

Address Line 2

City *

Province/Region/State *

Zip/Postal Code *

Country *

Cell/Mobile Phone

Phone Number

Email Address *

Facebook Name

Occupation

How was WD detected?

Kayser-Fleischer rings through an eye exam

Blood test (serum ceruloplasmin)

24-hour urine test

Liver biopsy

Genetic test

Family member or sibling was diagnosed with WD

Other

If other detection method was chosen, please specify.

How are you affected by Wilson disease (WD)?

Diagnosed with WD

Parent of child/children with WD

Spouse of someone with WD

Medical Professsional

Other

If other way that you are affected was chosen, please specify.

What symptoms or clinical features did you or your loved one experience that led to a diagnosis of WD?

Liver changes

Neurological issues

Psychiatric problems

Other

If other symptoms or clinical features was chosen, please specify.

What year was the diagnosis made and how long did it take to get diagnosed?

What treatment(s) are you or your loved one using?

Penicillamine (Cupramine or Depen)

Trientine (Syprine or Trientine Dihydrochloride)

Zinc

Other

If other treatment was chosen, please specify.

Have you had a liver transplant or ever been put on a transplant waiting list?

Yes

How has your life changed since the diagnosis of WD?

What has been your greatest challenge living with WD?

What do you want others to learn from your experience?

There’s often a silver lining or blessing that comes with our life challenges. What are you most proud of in your journey with WD?

Is there anything else about your story you’d like to tell or share?

What would you name this book?

If you would like your story to be considered for publication, we kindly ask you to read and agree to this release. Thank you! For valuable consideration, hereby acknowledged, I hereby authorize Rhonda Rowland, R2 Communications, LLC, and their respective licensees, successors and assigns, to use and publish my name, likeness, photographs of me, information and quotations from and about me (with possible editorial changes) and any copyrighted materials provided by me, including without limitation, photographs and unpublished letters, in the book being written by Rhonda Rowland on Wilson Disease (the "Book"), including in all editions, derivations and subsidiary uses of the Book in all forms and mediums whether now known or hereinafter devised, and in the advertising and promotion thereof, in all languages throughout the world and on this website and in social media. I waive any right to approve such use or uses or the Book. I further waive any claims that I may have against Rhonda Rowland, R2 Communications, LLC, and their respective licensees, successors and assigns, based upon the above use or uses, including without limitation, any claims for invasion of privacy, violation of the right of publicity, libel and copyright infringement. By checking off this box I understand that I am signing this form as if it were a hard copy. *

Yes

Please enter your full name *