As promised in my previous post, ...Through My Recent God Pause, I've been working on the VERY beginning stages of a book my husband and I are attempting to write. We have no idea what this will bring. We have no idea where this will take us. At the moment, we would like to have it published one day but we may change our minds in the future.
This book is a tribute to my father. Dad is suffering from a neurological disease believed to be CJD and we have been told we will lose him by the end of the year. Mr. Galloping and I are putting in writing what we've experienced, what we've learned and how we've survived my father's HORRID illness, our shotgun engagement, one shotgun wedding and planning a second, formal wedding.
I hope to shine some light on a disease that, in a year's time, only affects about 200 people in the United States.
I'm writing this post to pimp out our blog dedicated to documenting the journey of writing our book. Go and check it out, if you like what you see...please let me know, follow along and grab the button for your sidebar!! Please help us share our story!
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I am so sorry about your dad.
ReplyDeleteI didn't realize there were really any people in this country with CJD --- did they contract it here or spend time in England or what?
Thank you. Its a rough rough road. He is so young (48), I'M so young. My little brothers are still in HIGH SCHOOL. They were SO close to him. We all were.
ReplyDeleteFrom what I've learned from our docs at Emory and information on the CJD foundations website(cjdfoundation.org); There are three types of CJD: Sporadic, Familial/Genetic, and Acquired.
Sporadic (meaning from an unknown cause) is the most common in USA cases (85%) and the one our Docs believe Dad has.
Familial/Genetic pretty much speaks for itself. There will be testing done in our family to see if the protein 14-3-3 (linked to CJD) was passed down.
Acquired can be contracted in numerous ways:
Iatrogenic Contaminated Surgical Instruments
Contaminated Dura mater transplant
Contaminated Corneal transplant
Contaminated Human Growth Hormone
Contaminated beef
There has never been a KNOWN case of CJD contracted through contaminated beef in the USA. The problem is, its SO rare and there is NO way to have a definitive diagnosis without a brain autopsy following death. I'm amazed at how few people choose to have autopsies done on their loved ones. There could be many more than the known 200 cases per year, but without brain autopsies on victims that had symptoms of CJD or mad-cow there is no way to tell. Plus, many supposed mad-cow victims could actually be CJD victims. Doctors are so unfamiliar with this disease that they will label someone a victim of mad-cow while they are alive (because they don't know what else it could be) and if the family takes that as a concrete diagnosis then why would they think an autopsy is necessary??
Once the time has come to say goodbye we want our Docs to learn as much as the can about this disease from my Dad...he would want it that way.
This is the main reason my Hubs and I are writing our book. We want to point a spot-light in this HORRID disease. Plus, share our secrets and tips on how we're managing to plan 2 weddings (one with a 300 person guest list) on a budget that's less than half of today's average cost of a wedding.