Chronic Illness Spotlight is a series in which different illnesses are highlighted and a Chronic Illness Warrior that lives with the illness is featured. In the last edition of Chronic Illness Spotlight, we learned about Arnold Chiari Malformation. In today’s edition we will learn about Familial Adenomatous Polyposis and will feature Jenny Jones.
What is Familial Adenomatous Polyposis?
According the the U.S. Library of Medicine, “is an inherited disorder characterized by cancer of the large intestine (colon) and rectum. People with the classic type of familial adenomatous polyposis may begin to develop multiple noncancerous (benign) growths in the colon as early as their teenage years. Unless the colon is removed, these polyps will become malignant (cancerous).”
A person with Familial Adenomatous Polyposis can have hundreds of polyps in their colon and is usually present in the teenage years. If not treated, these polyps will become cancerous. Because of the high number of polyps and the fact that they will return if removed, removal of the colon is usually the treatment recommended.
Want More Information?
These websites are a great resource for more information.
Meet Jenny Jones
Jenny is a fierce advocate and poet. (you can find some of her poetry, here)
She raises money for the NORD FAP Research Fund through her shop and online fundraising efforts. Please visit her online store to help her raise money. All of the proceeds are donated to FAP research.
She has a Masters Degree in Social Work and is also a contributor to several publications including The Mighty.
Thank you for sharing your story with The Frozen Mind!
Briefly explain your illnesses
Familial Adenomatous Polyposis (FAP) is a genetic rare disease that causes thousands of precancerous polyps to develop in the colon and elsewhere in the GI tract resulting in cancer, if the colon isn’t removed, as well as extracolonic manifestations and additional cancers.
I also have Short Bowel Syndrome (SBS). It is a rare disease that causes excessive diarrhea resulting in malnutrition and malabsorption due to removal of colon and lack of small intestine.
How has your illness impacted your life?
FAP and SBS have impacted and shaped my entire life from my school and job choices to where I live. I can’t complete activities as easily as healthy individuals and some activities I can’t do simply because I need restroom access. I often do not feel well or am tired that further limits activities. Food causes me to have pain and nausea.
How long did it take to get diagnosed?
It took a few months due to requiring a referral to a specialist from the PCP who refused to do so stating I was a “whiny child” and nothing was wrong with me. Once I obtained a referral, my GI doctor quickly diagnosed me based off of family history and confirmed with a colonoscopy and gene testing.
How is your life different now compared to a few years ago?
My health only continues to worsen although at a gradual pace. I am now able to maintain my electrolytes but now I’ve developed chronic pain and chronic nausea that will only worsen as adhesions from previous surgeries continue to worsen.
What do you do on you bad days to make them better?
I sleep when I can, I usually feel better after I’ve slept as the pain has subsided for the most part after a few hours.
How do you handle the isolation you may experience because of your chronic illness?
I reach out to others via text or social media particularly when I’m feeling lonely. I spend time with my parents and my friends as able and if I need, my parents will come over to my house whenever I ask.
What advice would you give someone that is trying to get diagnosed or is has a new diagnosis?
Find a GI doctor that is familiar with FAP, someone who you feel comfortable with and will work with you and your concerns. Familial Adenomatous Polyposis requires regular monitoring in order to catch cancer development early for the best possible treatment and outcome.
Never be afraid to ask questions or to speak up for yourself, educate yourself as much as possible about your conditions. You are not alone, especially with social media now to connect to others with the same condition and similar experiences.
Where you can find Jenny Jones!
Read more Chronic Illness Spotlight Articles:
- Chronic Illness Spotlight: Familial Mediterranean Fever
- Chronic Illness Spotlight: Rare Bone Disease & More
- Chronic Illness Spotlight: Ehlers Danlos Syndrome
- Chronic Illness Spotlight: Myalgic Encephalomyelitis & Fibromyalgia
- Chronic Illness Spotlight: Atypical Bilateral Trigeminal Neuralgia