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Which advice would you give to someone who has just been diagnosed with Familial Adenomatous Polyposis?

See some advice from people with experience in Familial Adenomatous Polyposis to people who have just been diagnosed with Familial Adenomatous Polyposis

Familial Adenomatous Polyposis advice

Familial Adenomatous Polyposis (FAP) is a genetic disorder characterized by the development of numerous polyps in the colon and rectum. If you have recently been diagnosed with FAP, it is understandable that you may be feeling overwhelmed and uncertain about what lies ahead. However, it is important to remember that you are not alone in this journey. Here are some key pieces of advice to help you navigate through this condition:



1. Seek Expert Medical Guidance


Consulting with a team of healthcare professionals who specialize in FAP is crucial. They will provide you with accurate information, answer your questions, and guide you through the treatment options available. Your medical team may include gastroenterologists, genetic counselors, surgeons, and nutritionists.



2. Understand the Genetic Aspect


Since FAP is a genetic disorder, it is important to comprehend its inheritance pattern and implications for your family members. Consider discussing genetic testing with a genetic counselor to determine if your relatives are at risk. Early detection and intervention can significantly improve outcomes.



3. Regular Screening and Surveillance


Regular colonoscopies are essential for individuals with FAP. These screenings help detect and remove polyps before they become cancerous. Your medical team will establish a surveillance schedule tailored to your specific needs, which may involve frequent colonoscopies starting at a young age.



4. Explore Treatment Options


Depending on the severity of your condition, your medical team may recommend various treatment options. Surgical intervention, such as a colectomy (removal of the colon), may be necessary to prevent the development of colorectal cancer. Other medications and therapies may also be considered to manage symptoms and reduce polyp growth.



5. Embrace a Healthy Lifestyle


Adopting a healthy lifestyle can play a significant role in managing FAP. Focus on maintaining a balanced diet rich in fruits, vegetables, and whole grains. Regular exercise can help improve overall health and reduce the risk of complications. Additionally, avoid smoking and excessive alcohol consumption, as they can exacerbate the condition.



6. Seek Emotional Support


Living with a chronic condition like FAP can be emotionally challenging. Reach out to support groups, both online and offline, to connect with individuals who share similar experiences. Sharing your concerns, fears, and triumphs with others who understand can provide immense comfort and guidance.



7. Stay Informed and Educated


Continuously educate yourself about FAP and stay updated on the latest research and treatment advancements. Knowledge empowers you to make informed decisions and actively participate in your healthcare. Reliable sources such as medical journals, reputable websites, and patient advocacy organizations can provide valuable information.



Remember, while FAP may present challenges, it does not define you. With proper medical care, support, and a proactive approach to managing your health, you can lead a fulfilling life. Stay positive, stay connected, and never hesitate to reach out for help when needed.


Diseasemaps
5 answers
Go to a doctor/hospital with a Fap GI/geneticist like mine. Mayo Clinic Jacksonville Fl Dr. Douglas Riegert-Johnson

Posted May 18, 2017 by Holly 2000
Understand your diagnosis by asking your medical team questions, research your condition and remain positive

Posted May 19, 2017 by Daniel 2570
It is scary to find out that you have such a high risk of developing cancer. But through a few steps, you can reduce the chances of developing many polyps. My grandfather is in his 70's and is living a normal life. The colonoscopies are inconvenient and can be embarrassing, but they allow you to stay on top of your life. My best advice is to research the disease. Talk to other people who have it, and make an effort to see your gastroenterologist on a regular basis.

Posted Sep 28, 2017 by Jennifer 1600
Go to MD Anderson or Cleaveland Clinic for the best medical care. Don't miss your scopes. Don't use a doctor that's not already treating a number of FAP patients. Choose a doctor that is continually educating themselves on the studies and information coming out for FAP.

Posted Sep 29, 2017 by ChristiDarty 1300

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Hi.  In May 2011, after a 10 day stay at a local hospital that started on Mother's Day where it was first thought that I had an appendicitis I went home with the results of a scope that found cancer in my decending colon and waiting for the result o...
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Hi, all! So first of all, I found the link to this map here: https://www.facebook.com/groups/257034824414129/ There are tons of online resources for us. I especially love j-pouch.org, which has its own FAP section and a MASSIVE forum for you to ran...
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What mediciations or therapies have you found that are successful in limiting or reducing the growth of polyps?

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