PGAD Book

[Rosalita60]

Hello, all.
I am a PGAD sufferer and have been for at last four years.
I am also a writer, who worked as an editor at a financial news service for almost 20 years. I write crime novels that have not yet been published, sadly.

About two months ago, I took pen to paper and began to record my experiences with PGAD. I have about 20 pages that I am happy with at this point. I do not wish to simply tell my own story, however. Tentatively titled Secret Rose, the book is intended as an exploration of this horrific disease and what it does to those who get it. I intend to inject hopefulness and practical support into the book. Under no circumstances will this be a misery memoir. I have already had input from Dr. Echenberg in Bethlehem, Sharon Nathan in New York (she co-discovered the syndrome in 2001) and other researchers in the US and Canada.

This message is effectively an early callout to see if anyone wishes to talk to me about symptoms, effect on lifestyle, doctors visited and treatments tried. I would like to incorporate personal stories into a draft for my literary agent in New York. My suggestion is that anyone who is interested or curious, contact me via FB messenger or judithasullivan3@aol.com. Of course, if anyone agrees to be interviewed, I am happy to use pseudonyms and change details of profession, location etc. I would send some of what I have already written to people so they could judge my style, compassion and knowledge before they talk to me.

A few words about me. I am Anglo-American living in London, originally from Baltimore. I was recently widowed and until October 2020 lived with the wonderful Clive. I have family in the UK, France and the US.

This could be a really good thing for all of us. We could lift the lid on this nasty thing and help patients recognize the symptoms earlier and doctors identify causes and treatments more easily.
All best,

Judith

[Violet M]

Hi Judith,

I think it's great that you are writing this book. I would be happy to be interviewed but I don't use FB so you are welcome to send me a private message on this forum and we can figure out how best to communicate.

Violet