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Standing Up to POTS Store

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My Life with POTS book

Thrivent Meet the MemberLily and Kate, ages 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 the Standing Up to POTS Research Fund.  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.  To read or print a copy of this Thrivent article, please click here for a .pdf version of the article.


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.  

Tote bag sale

Standing Up to POTS is selling tote bags for use in the grocery or other stores.  We are selling the totes for $12 each.    No additional charge for shipping and handling. Supplies are limited. 100% of the proceeds will go to the Standing Up to POTS Research Fund.

Tote bag for website