After developing symptoms of colon cancer, Zeke discovers that he has a rare disease Familial Adenomatous Polyposis (F.A.P). He takes a trip to the hospital and meets Katie, who has the same disease! Zeke must be treated for his symptoms, illnesses, and all of the fuss that makes him feel mad and sad at the same time. With the help of doctors, his new friend, Katie, and his mom, Zeke learns how to face his feelings, and bounce back from his treatments and diagnosis through true friendship.
About the Author:
JennyJoneswas diagnosed with the rare diseases Familial Adenomatous Polyposis and Short Bowel Syndrome as a child that continue to greatly impact her life. Through her experiences, she has dedicated her life to the rare disease and chronic illness community to empower others, raise awareness, and research funds.
Jenny knew at a young age she wanted to be in the medical field to provide care to others – only she didn’t expect the path she finally chose. Due to developing medical PTSD related to her health experiences with Familial Adenomatous Polyposis (F.A.P.), she realized she would not be able to physically administer health care. Her medical PTSD experiences led her to discover a new passion – helping to empower others with chronic illness. Jenny has dedicated her professional and personal time to the rare disease and chronic illness communities by providing counseling, education, raising awareness, and research funds for the F.A.P. Research Fund, she started through NORD. Others may say not to let your chronic illness define you, but Jenny has been able to discover motivation and purpose through her rare diseases.
To learn more about Jenny’s medical experiences, follow along on Life’s a Polyp.
This book was amazingly helpful in explaining FAP to my two newly diagnosed teen children. Their sibling (who tested negative) has intellectual disability, autism, and epilepsy—so I have often had to make our own social stories to prepare for medical situations. Jenny Jones saved me all that work this time! And with so much more detail than I would have been able to know about at this early stage in our own journey!!! Because it’s an easy read, with a great glossary of terms, I was able to read to each kid individually in one sitting and discuss. Now we will share it with family who have questions, and it will save me having to explain on my own repeatedly. Trust me—that can be an added stress parents and patients need a break from! Thank you, Jenny!!!
MS. JONES has written the definitive, easy-to-read explanation for what it's like to live with FAP --a disease of polyps.
There is a world of people - out there - suffering in silence, and her invitation to each of them is to LIVE TOGETHER in community of common understanding and disease.
A wonderful book that is helping to explain to our 8 year old grandson what FAP is and what he has ahead of him. He was tested as an infant and we have been trying to prepare him for life with FAP. This book gives a relatable way for him to understand. I bought 2 more books so we can share it with family and friends. Thank you.
This book is packed full of real vivid life experiences that should be extremely informative and valuable to a young person facing surgery and perhaps an Ostomy bag. Solid facts and extremely well written it is a wonderful resource book for the family facing some difficult times and decisions.
This is a very well written and very well illustrated book which is very easy for both adults and children to read and logically follow. The glossary is an excellent resource to enable any reader to easily understand the vital facts about FAP. The beautiful way in which this book is written and enhanced by the excellent illustrations will enable newly diagnosed children and adults to alleviate the initial shock/stress which often accompanies their diagnoses, and it can strengthen the relationships between parents and newly diagnosed children. This is a must read for everyone with FAP. I have been very well acquainted with FAP for over 50 years, and I learned some new and valuable information through my reading of this excellent book.
I was diagnosed with FAP at age 13 and had a proctocolectomy just after turning 14, and I had an ileostomy. In 1994, I heard about a BCIR (Barnett Continent Intestinal Reservoir) procedure and decided to have that procedure. Having some physical problems with it, I had it redone in 2000. Still the physical health challenges continued, and I had decided in 2007 to go back to a Brooke ileostomy. Immediately, the physical challenges mostly disappeared. In 2014, I met several others with hereditary genetic conditions at a local conference and was inspired to begin a Peer Discussion Group through the Cancer Support Community of Greater Ann Arbor in March 2015. We now meet virtually every 3rd Thursday of each month. I met Jenny Jones via her blog - LifesaPolyp - and we have attended a couple hereditary Colorectal Conditions conferences together. Jenny is very active within our Peer Discussion Group as well as on several Facebook FAP sites. I am deeply grateful for the opportunity to collaborate, to be her friend, and to support the vital work she has done and is effectively engaged in!
This book, "Life's a Polyp, with Zeke and Katie" is a very well written and very well illustrated book. It presents the vital facts about FAP in a very logical sequence and will enable readers - both children as well as adults to learn a great deal about this rare disorder and to alleviate any initial shock/stress which often accompanies newly diagnosed children and adults. I have had FAP for over 50 years, and I learned some new information with this excellent book. It is most definitely a must read for both children and adults. This is an excellent book to be shared by parents with newly diagnosed children, as it has the ability to strengthen their interactions together around this disorder.
Great book!! We need more books like these that help disabled kids understand their tests, and for non disabled kids to see what some disabled kids have to go through.
Well written and easy to understand. The author, Jenny, also used real sources within the story, included a glossary and list of resources to further one's education about FAP and ostomies.
This book is great at offering empathy to kids or adults who are having this experience. It really puts it into non-threatening and encouraging language to allay the reader’s fears but to also give them facts to help them understand and know what to expect. I know readers will appreciate getting honest answers to their questions from an author who has been through and continues to go through this. Ms. Jones has been an outstanding advocate for those who live this experience.
Children with rare diseases often feel alone and misunderstood. This book helps them realize there are others out there like them. It also shows them that even if what they’re going through is scary there are many people they can talk to.