My Life with POTS

Thrivent Meet the MemberLily and Kate, age 12 and 9 at the time of publication, teamed up to write and illustrate an 18 page book entitled My Life with POTS.  This book chronicles a 2 ½ year journey through illness, doctor’s appointments, and postural orthostatic tachycardia syndrome (POTS) for Lily in her own words.  The book is beautifully illustrated by her younger sister, Kate.  They have already raised more than $4000 through donations for the book, and 100% of the profits are donated to help educate the medical profession and fund research focusing on the etiology and/or treatment of pediatric POTS patients.  These books can lead to conversations with families and friends about the daily realities of dysautonomia, and can be a great way to open the minds of healthcare practitioners in your area.  100% of the proceeds from the sale of the book will be donated to Standing Up to POTS, a 501(c)(3) charitible organization. To read or print a copy of this article, please click here for a .pdf version of the article.

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Praise for My Life with POTS

Lindsay J., POTS sufferer, from San Diego, California

Lily's words show just how mature she is for her age, and were really inspiring. It's so easy to be negative and to give up when we often feel sick and other people don't always understand, but Lily's words reminded me my health is important and worth fighting for. My favorite line of the book (which I have to admit, still makes me teary-eyed every time I read it) is to tell the doctors "Use the leftover blood for research" when they take blood. It's very profound.

Thrivent BannerAnd, I can't believe Kate in only 9! The artwork was great and definitely added another element to the book. All the drawings really helped to bring the book together and helped me picture what Lily was saying. Kate, like her sister, is obviously very talented!

Maureen R., grandmother of POTS sufferer, from Naples, Florida

I received the books today and my husband and I read them immediately.  What a wonderful job Lily and Kate have done!  You must be so proud of them.  Although I have watched my grandson endure this horrible disease, there are many things related to his illness that even I did not realize. Both my husband and myself have gained valuable insight into this disease and we will go on to educate everyone we can about this.  Please thank your daughters for this, they have such a beautiful way of expressing such difficult emotions.  

Judy P., grandmother of POTS sufferer, from Lake City, Florida

Frankly, I am at a loss for words after reading the book.  Lily is an extremely intelligent young girl who is wise far beyond her age.  Her thoughts are so profound, yet beautifully portrayed.  As a grandmother of a teen who has just been diagnosed with POTS, I want Lily to know that she had me in the palm of her hand with each and every page that I read.  I could almost feel the symptoms that she was describing.  Her words are powerful, encouraging, informative, and engaging.  May God bless her for sharing her story, so that others may remain positive and become a SURVIVOR with her.

Kate's art work generates meaning to every page of Lily's words and thoughts.  Her work is so detailed and meticulous for her age. 

My Life with POTS coverDr. Bob Davis, Professor of English, Wittenberg University, Springfield, Ohio

I’ve read your book half-a-dozen times and each time I experience your personality passing right across the page (even though we’ve never met). You’re a remarkable writer, Lily. You have the ability to reach across to us and lead us into your life, helping us see and feel POTS from the inside: the frustration you felt from doctors who didn’t understand; the bee-sting pain in your legs; the endless pills and clinic trips; the feeling of an elephant on your chest; the feeling of trying to “think through goopy mud.” It brought tears to my eyes sometimes. But the book ends with your voice of encouragement and support to other POTS survivors. And maybe that’s the most remarkable thing about your project: your gift of support and shared witness, and the power of your writing to reach across to people you don’t know and draw them in to the circle of your intelligence and concern. Thank you for that.

I also wanted to say to Kate how powerful the drawings are, especially their ability to translate into images the complex ideas of Lily’s prose. Seeing both together—word and image—and knowing that you walked every step of this journey with your sister is deeply moving to me.