Jolandie

+27 83 264 0439

Robin

+27 83 414 1191

Email

jolandie@fancsa.org.za

Guiding you towards prevention & better quality of life

Living Well with Fanconi Anaemia (FA)

Understanding cancer prevention and the various health challenges associated with FA is essential, not only to empower yourself but also to help your healthcare team provide the best possible care. In the world of FA, knowledge truly is power!


FA affects multiple parts of the body because of its connection to DNA repair. This can lead to issues such as abnormal development of hands and arms, hormonal imbalances, blood disorders, gynecological and dermatological concerns, hearing difficulties, and nutritional challenges. Additionally, people with FA face a significantly higher risk of developing certain cancers, particularly solid tumors in the head and neck, at a younger age than the general population.


To support you on this journey, please visit our Resources Page, where you’ll find a list of specialists and clinicians in South Africa experienced in managing FA.

VISIT RESOURCES PAGE

VISIT RESOURCES PAGE

Cancer Prevention and Early Detection in FA

Early detection remains the most effective way to manage cancer risks in individuals with FA. Because traditional treatments like chemotherapy and radiation can cause serious side effects in FA patients, regular health screenings by specialised healthcare providers are crucial.


Below, we have compiled a recommended health screening checklist as advised by the Fanconi Cancer Foundation, leaders in FA

research and care, to help you stay proactive about your health.

Health Screening Recommendations for Individuals with FA

Head and Neck, Oesophagus Cancer Screening

The risk of solid tumors in areas like the mouth, throat, and oesophagus increases with age in FA. Regular screening by your Ear, Nose, and Throat (ENT) specialist is recommended every 6 months.

Anogenital

Annual colonoscopy with a gastroenterologist is recommended.

Gynaecological Screening

Females with FA have a significantly higher risk of developing tumors in reproductive organs. Screening should begin around age 16 or at childbearing age.

Oral Health

People with Fanconi Anaemia have unique health risks that require careful and regular monitoring.

Below is a recommended screening schedule to help detect potential issues early and maintain your health.

Because cells in the mouth divide frequently, cancer risk is higher. Visit your dentist every 3 months for a standard cleaning to maintain great oral hygiene.

Tip: Download our screening form (link to form) to bring to your dental appointment.

When not visiting your dentist, use the FAexam App to perform monthly self-exams.

Skin Check

Visit a dermatologist once a year or as needed.

Head and Neck, Oesophagus Cancer Screening

The risk of solid tumors in areas like the mouth, throat, and oesophagus increases with age in FA. Regular screening by your Ear, Nose, and Throat (ENT) specialist is recommended every 6 months.

Oral Health

People with Fanconi Anaemia have unique health risks that require careful and regular monitoring.

Below is a recommended screening schedule to help detect potential issues early and maintain your health.

Because cells in the mouth divide frequently, cancer risk is higher. Visit your dentist every 3 months for a standard cleaning to maintain great oral hygiene.

Tip: Download our screening form (link to form) to bring to your dental appointment.

When not visiting your dentist, use the FAexam App to perform monthly self-exams.

Anogenital

Annual colonoscopy with a gastroenterologist is recommended.

Skin Check

Visit a dermatologist once a year or as needed.

Gynaecological Screening

Females with FA have a significantly higher risk of developing tumors in reproductive organs. Screening should begin around age 16 or at childbearing age.

View or download the Screening Checklist

English

English

A Note on Advocacy and Awareness

Fanconi Anaemia is a rare condition, and many physicians or specialists may not be familiar with its unique challenges. This can sometimes lead to important signs being overlooked, especially since the types of cancers common in the FA community often appear much earlier than in the general population (where they typically occur after age 60).


That’s why it’s crucial to take charge and advocate for your own health. People with FA often become experts in their own care, sometimes knowing more about their condition than a room full of doctors!

Remember, your voice is your strongest tool.

In-Depth Resource: Lifestyle and Cancer Prevention in Fanconi Anaemia

Fanconi Anaemia (FA) is a genetic condition that affects DNA repair, making individuals more vulnerable to cellular damage and cancer development. While FA poses unique health challenges, adopting specific lifestyle habits can help reduce risks and support overall wellbeing.

Why Lifestyle Matters in FA

Because DNA in FA patients is more prone to damage from environmental and internal factors, minimising exposure to harmful agents is crucial. Lifestyle choices impact oxidative stress, inflammation, and cellular repair mechanisms, so making thoughtful lifestyle changes can have lasting benefits when it comes to cancer prevention.

SMALL CHANGES > PREVENTION > LONG-TERM IMPACT

Here are some very important, evidence-based steps to support cancer prevention and overall wellbeing:

Oral Health:

The mouth is a common site for FA-related cancers. Maintaining excellent oral hygiene reduces infections and inflammation, both of which can increase cancer risk. Regular dental checkups and use of alcohol-free mouthwash are strongly advised.

Nutrition:

A Mediterranean-style diet rich in antioxidants, fiber, and healthy fats helps reduce oxidative stress and inflammation. Foods such as leafy greens, berries, nuts, olive oil, and fatty fish support DNA health. Limiting refined sugars and processed foods is equally important.

Avoiding Toxins:

Alcohol and tobacco contain carcinogens that significantly increase cancer risk in FA patients. Avoiding these substances entirely is critical.

Mediterranean-style meal ingredients

Sun Protection:

FA patients are highly sensitive to UV radiation, which can accelerate skin damage and cancer risk. Using broad-spectrum SPF 30+ sunscreen daily, wearing protective clothing, and seeking shade are essential habits. Avoid tanning beds and prolonged sun exposure. FCF recommends wearing sunscreen that includes ingredients like zinc oxide or titanium dioxide. Zinc and titanium are inert minerals that just sit on the outside of the skin. They do not have carcinogenic properties and tend to cause less irritation and skin allergies than chemical sunscreens.

Physical Activity:

Regular moderate exercise improves immune function, circulation, and metabolic health. Choose enjoyable activities and aim for at least 150 minutes per week.

Antioxidant Support – Quercetin:

Quercetin is a naturally occurring flavonoid found in apples, onions, berries, and tea. It scavenges free radicals, helping protect cells from oxidative damage. Though not a substitute for medical treatment, supplementation may offer added cellular protection. Always consult your healthcare provider before starting any supplements.

Oral Health:

The mouth is a common site for FA-related cancers. Maintaining excellent oral hygiene reduces infections and inflammation, both of which can increase cancer risk. Regular dental checkups and use of alcohol-free mouthwash are strongly advised.

Sun Protection:

FA patients are highly sensitive to UV radiation, which can accelerate skin damage and cancer risk. Using broad-spectrum SPF 30+ sunscreen daily, wearing protective clothing, and seeking shade are essential habits. Avoid tanning beds and prolonged sun exposure. FCF recommends wearing sunscreen that includes ingredients like zinc oxide or titanium dioxide. Zinc and titanium are inert minerals that just sit on the outside of the skin. They do not have carcinogenic properties and tend to cause less irritation and skin allergies than chemical sunscreens.

Nutrition:

A Mediterranean-style diet rich in antioxidants, fiber, and healthy fats helps reduce oxidative stress and inflammation. Foods such as leafy greens, berries, nuts, olive oil, and fatty fish support DNA health. Limiting refined sugars and processed foods is equally important.

Physical Activity:

Regular moderate exercise improves immune function, circulation, and metabolic health. Choose enjoyable activities and aim for at least 150 minutes per week.

Avoiding Toxins:

Alcohol and tobacco contain carcinogens that significantly increase cancer risk in FA patients. Avoiding these substances entirely is critical.

Antioxidant Support – Quercetin:

Quercetin is a naturally occurring flavonoid found in apples, onions, berries, and tea. It scavenges free radicals, helping protect cells from oxidative damage. Though not a substitute for medical treatment, supplementation may offer added cellular protection. Always consult your healthcare provider before starting any supplements.

Mediterranean-style meal ingredients

Additional Reading and Resources:

Additional Reading and Resources:

Fanconi Cancer Foundation: fanconi.org

Clinical Care Guidelines for FA: fanconi.org/clinical-care-guidelines

Mediterranean Diet Overview: oldwayspt.org/traditional-diets/mediterranean-diet

Exercise Guidelines for Cancer Prevention: cdc.gov/cancer/prevention

Preventative Measures

Preventative Measures

Taking proactive steps can help you stay ahead in managing Fanconi Anaemia and reducing cancer risks.


Monthly Oral Self-Examination

Use the FAexam app to perform a thorough monthly check of your mouth and oral mucosa. Early detection of any changes is crucial.


Learn more and download the app here:

FAexam iCare English

FAexam iCare English

FAexam Lexicon

FAexam Lexicon

How to perform FA oral self-exam

How to perform FA oral self-exam

Hands holding a leaf

If you or your loved ones are struggling, professional counselling can provide valuable tools to help manage stress, anxiety, and grief.


Healthy Stress Relief & Coping Mechanisms

Managing stress positively impacts your overall health. Explore techniques that work for you, such as meditation, deep breathing exercises,

yoga, creative hobbies, or talking with supportive friends and family.


Psychological Support

Living with Fanconi Anaemia can be overwhelming and frightening. The uncertainty and challenges of this rare disease often bring

a wide range of emotions; fear, sadness, frustration, that can impact your mental health and overall quality of life.


It’s important to acknowledge these feelings and find healthy ways to cope. Seeking emotional support is a sign of strength, not weakness.


For specialised support, consider reaching out to organisations experienced in rare disease counselling.

For specialised support, consider reaching out to organisations experienced in rare disease counselling.

You may also find comfort and guidance through services like Negative Space, which offers support tailored to chronic illness and caregiver support.

You may also find comfort and guidance through services like Negative Space, which offers support tailored to chronic illness and caregiver support.

Rare Diseases Counselling Resource

Rare Diseases Counselling Resource

Negative Space Caregiver Support

Negative Space Caregiver Support