Share Your Personal Hepatitis C Story
December 11, 2004
Would you please share your Hepatitis C survival story?
This is a chance for you to tell all about your personal experience with this disease—and possibly have your words seen by thousands of other patients who could be helped by your insights.
We are putting together a collection of patient stories in a book as part of our patient education and advocacy mission. The purpose is to provide a realistic frame of reference for all Hepatitis C patients. A frame of reference gained directly from others in similar circumstances, with shared experiences.
We believe this book could help all Hepatitis C patients better cope with the fear, confusion and adjustment that inevitably come after a Hepatitis C diagnosis.
Your own personal experience might be extremely valuable for others to learn from, especially as part of a collection of Hepatitis C survival stories from a wide variety of patients. This is true whether you you believe your experience to be extraordinary or commonplace.
Please consider that your own story could be just what someone else needs to hear to get them through—even if you don’t think there is anything particularly special about it. Even if you’ve never really told it to another patient before.
I’ve heard that a burden shared is a burden halved. Just knowing others have gone through, or are going through, similar circumstances can do a lot to help one deal better with any reality that confronts them. Your sharing could help others who are very much like you. And, you may find the simple act of sharing your story to be therapeutic for you, as well.
As a Hepatitis C patient, you can probably understand how it might help others immensely if they have the opportunity to learn from your experiences (both good and bad).
Wouldn’t you like to know how others have dealt with (or are dealing with) Hepatitis C in their lives? In the same way, other patients might very well appreciate knowing about your experiences.
If you have chronic Hepatitis C and you are reading this email, then you are a Hepatitis C survivor. If you are here today, then one way or another, you are surviving. You have probably survived decades with this chronic, potentially deadly disease (although you were most likely unaware you even had it for most of this time). Since your diagnosis, you have dealt with this disease in your own way. The disease has affected your life uniquely.
Each and every survivor’s story is unique. We want to consider yours for inclusion in this collection. Think of it as a potential contribution to the entire Hepatitis C community.
Incidentally, once the book is published you will be able to get a copy for yourself at Amazon.com, or your local bookstore, to see how other patient’s stories are similar and different from your own.
To make your submission most informative and relevant, you might look at sharing the following aspects of your experience:
- How did you discover you have HCV?
- What genotype do you have?
- How elevated were/are your liver enzymes?
- How do you believe you contracted it?
- Do you suffer physical symptoms from the disease? If so, what are they?
- How were you affected emotionally when you found out?
- How did your family react? Your friends? Your lovers?
- What did your doctor say? What was their recommendation?
- What did you do to learn more? Where did you find the most helpful information (recommended resources)?
- Did you get a biopsy? If so, what was it like? What did it show? If not, why not? And what did you do instead?
- What stage and grade is your inflammation/fibrosis?
- Did you choose interferon therapy? Why (or why not)? If yes, what was your experience with it?
- Did you make lifestyle changes? If so, which? If not, why?
- Did you choose nutritional supplementation and/or other natural remedies? If so, which and why?
- Did you join a support group or online bulletin board?
- Do you have health insurance? Is it covering your treatment choices?
- What about Social Security or disability insurance?
- If you are veteran, what has your experience with the VA been like?
- Has the disease affected your job?
- Are you secretive about having the disease because of concerns about what people might think or how it might affect your work or social relationships?
- If you’ve cleared the virus, how long have you been undetectable?
- If you are on a transplant list, what is that like?
- If you’ve had a transplant, what would you most like to share about that experience?
These are just suggestions. You can be detailed or brief. You might consider elaborating on just one or two of these topics. You may choose to address them all, and more. The fundamental question is, “what do you think is most important for others to know about your experience with Hepatitis C?” The choice is yours. We simply ask that you keep your submission to no more than 1,000 words. And we reserve the right to edit appropriately.
You can participate anonymously with your first name and last initial (along with your state of residence) or you can give your full name and state (or country if not in the USA).
If you choose anonymity, with first name and last name initial only, your anonymity will be respected and protected.
Send submissions to [email protected]
We will let you know whether or not your story is chosen for the book. This is not a writing contest. Stories will be included in the book based on their appropriateness as part of the entire project. They will not be judged on grammar, punctuation or writing style. Even those not chosen for the book will be posted directly on an associated website for public access. That way, even if not included in the book, your story will be told.
Thank you, in advance, for sharing your story.
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