Home > Uncategorized > Please Share Your Story

Please Share Your Story

Would you be willing to share your story with others, to help raise awareness of the many faces of HE?  I am writing a book that will share as many patient stories as possible. I hope you will consider being a part of this first-ever book about HE.  My goal is to include at least 50 patient stories (either written by the patients themselves, or by loved ones). It has become increasingly clear to me as I communicate with HE patients around the world that there are FAR more of us than previously thought.

Together, we can help advance understanding of HE by sharing our stories.  This book – and the film that will be made in conjunction with the book – will show that HE affects all ages, all races, all nationalities.  It will outline treatment options, describe the variety of symptoms that HE can present, point out the research currently being conducted around the world and – through personal stories – reveal the successes and failures in treatment of HE.  

 Will you join me in showing themany faces of HE?  If you are willing to join in this effort, please email your story to hesilverlining@yahoo (.com of course).  Please take a look at this outline so that you can have an idea what to write about, and the order in which to tell your story:

I. First symptoms

How did you begin to realize you had a problem? Please give dates if possible. What were the first symptoms? How did those symptoms worsen?

II. Diagnosis

How did you receive the diagnosis of HE? Who made the diagnosis? When did you receive the diagnosis? Were you hospitalized? What did your test results show? 

III. Initial Treatment

What was the initial treatment? (be specific) How did you respond? What did your doctor(s) think about your response?

IV. Follow-up Treatment

What was your treatment AFTER the initial treatment? (be specific) How did you feel during treatment? what was your response to treatment? Did you have side effects? Did the medication have to be adjusted or changed? How did treatment affect your symptoms?

V. Today

What are your symptoms today? Are you able to work? drive? care for children/family? How does HE impact your daily life? Do you receive disability payments? (if so, please describe what kind of compensation you received, and how the process worked for you)

VI. How has having HE changed your outlook on life?

What is your emotional reaction? Has HE changed in the way you look at life? Has HE changed your spiritual outlook, if you have one? Are you optimistic? Pessimistic? Has HE impacted your relationships with others?

VII. Other observations

Please feel free to add your thoughts on other subjects relating to HE. 

Categories: Uncategorized
  1. susan foley
    September 26, 2012 at 2:23 pm

    Your good,

    Date: Wed, 26 Sep 2012 19:17:42 +0000 To: susanfoley@hotmail.com

    • September 28, 2012 at 1:32 pm

      I’m glad you find the site helpful, Susan!

  2. Nancy Martin
    November 19, 2012 at 8:58 pm

    Are you still collecting stories for your book. If so, I’d be very happy to send you the details on my husband. His HE started November 12, 2011, but the disease wasn’t really confirmed till September 2012.

    • December 6, 2012 at 11:35 am

      Yes, I am. I (“silverlining”) apologize for the delay in responding. I have had some personal issues that have kept me away from the computer. I may be only intermittently online for the next couple of weeks. Stories may be emailed to me at hesilverining@yahoo dot com. (Please note: I am writing out the “dot com” part of the email address in order to avoid having a scavenging device pick up the email address and start sending spam.)

  3. March 12, 2013 at 2:00 pm

    Hello! I’m new to your site and have found it to be a treasure trove of information! I posted earlier about our Facebook site and saw that it was already on your page and that it fantastic. As someone who has this disease/disorder I believe that educating and supporting as many people as we can, while we can is so important. I would absolutely love to share my story and the long journey it took to reach my diagnosis of Hashi’s. if you want, please friend me or message me on Facebook and we can go from there if that’s ok. Thank you for this site, its fantastic!!!

  4. March 20, 2013 at 3:31 pm

    Hi Lessa. I am on the Facebook site, where I post as Nicola. I’m pleased that you find value in the site. Best wishes to you!

  5. Lynda Christou
    April 30, 2013 at 1:15 pm

    Hi. I am going to send in my son’s story but it may take me a while to do it so will get back to you.

    • April 30, 2013 at 1:58 pm

      Thank you so much for offering to share your son’s story. We appreciate it, and please know that in sharing his story you will likely help another family that is going through something similar.

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