Whipple disease is an infectious bacterial disease caused by bacteria called Tropheryma whipplei. The infection usually affects the small intestine, leading to malabsorption. It can also affect other parts of the body such as the heart, nervous system, joints, blood system, lungs, brains and eyes. Whipple disease is much more common in males than females.

Below on this page is some information about this condition as well as links to useful resources for Australians living with a rare disease.

Synonyms: Intestinal lipodystrophy, intestinal lipophagic granulomatosis, intestinal whipple’s disease, secondary non-tropical sprue, tropheryma whipplei caused disease or disorder, tropheryma whipplei disease or disorder, tropheryma whipplei infectious disease, wd – whipple’s disease.

ORPHA:3452 Whipple disease

ICD-11: DA96.0Y Other specified intestinal malabsorption

Universal rare disease classifications provide a common language for recording, reporting and monitoring diseases. Please visit the Rare Disease Classifications page for more information about these internationally recognised classifications.

Rare diseases typically display a high level of symptom complexity. There is often a wide range of symptoms and the symptoms may vary between individuals in terms of its presentation, severity, duration and impact.

Please speak to your medical team to learn more about the symptoms of this condition.

Rare diseases are often serious and progressive, exhibiting a high degree of symptom complexity, leading to significant disability. Majority of the estimated two million Australians living with a rare disease meet the Australian Government’s definition for disability (in accordance to the Australian Public Service Commission and Australian Bureau of Statistics), and many experience severe and permanent disability impacts. If you or someone you care for is experiencing disability-related impacts from a rare condition, please speak with a health or disability professional for advice. Information about relevant disability support can be found at the RARE Portal’s Disability Support Information page.

Whipple disease is caused by infection with bacteria called Tropheryma whipplei. In most people with the infection, they do not have any symptoms or have mild symptoms that resolve shortly.

In people with Whipple disease, their immune system is unable to remove the bacteria. This leads to symptoms in the gastrointestinal systems such as malabsorption, nutritional deficiencies, weight loss, diarrhea, fever, and abdominal pain. The bacteria may also affect other organs such as the heart, nervous system, joints, blood system, lungs, brains and eyes.

It is not well understood how the bacterial infection causes Whipple disease in some people but not others.

A timely diagnosis is critical for better patient outcomes, the provision of the best possible care and treatment options, access to services and support, increased reproductive confidence and the ability to participate in clinical trials.

Please speak to your medical team to learn more about the available diagnostic pathways for this condition.

Please speak to your medical team to learn more about the possible treatment or management options for your condition. Treatment will depend on an individual’s specific condition and symptoms. It is also important to stay connected to your medical team so that you can be made aware of any upcoming clinical trial opportunities.

Clinical care for rare diseases often involves a multidisciplinary team of medical, care and support professionals. Please note that the information provided here is as a guide and that RVA does not necessarily monitor or endorse specific clinics or health experts.

Healthcare professionals involved in the care of people with Whipple disease may include general practitioners (GP), infectious disease specialists, gastroenterologists, internal medicine physicians, dietitians and others. The need for different healthcare professionals may change over a person’s lifetime and extend beyond those listed here.

If you know of any relevant care guidelines, please let us know via the Contribute page.

Individuals living with rare diseases may have complex medical issues and disabilities, which are not always visible. It is often useful to refer to their medical history as well as personal information such as a medical card, doctor’s letter, or if available, a rare disease passport, for relevant information.

If you know of any relevant emergency management guidelines or information relevant to emergency care, please let us know via the Contribute page.

Barwon Health Research: Australian Rickettsial Reference Laboratory has information on Whipple disease’s research in Australia.

There are specific considerations around participating in rare disease research, including clinical trials. It is important to be mindful of issues such as data privacy, research ethics, consent and differences in research regulations between Australia and other countries.

If you are interested in finding clinical trials for your condition, please visit the following websites; however, there may not be any clinical trials available:

• Australian Clinical Trials
• ClinicalTrials.gov

It is best to discuss your interest in any clinical trials with your medical team to determine suitability and eligibility.

Please note that RVA does not necessarily monitor or endorse each group/organisation’s operational governance and activities.

We are not aware of any rare disease organisations for Whipple disease in Australia or internationally. If you know of any rare disease organisation/s supporting people living with this condition, please let us know via the Contribute page. If you are interested in starting an Australian organisation, please see Engaged, Ethical and Effective: A Guide for Rare Disease Organisation Leaders in Australia.

Please note that RVA does not monitor or endorse each group/organisation’s operational governance and activities. When engaging with a group, please consider the information on the RARE Portal’s Finding Helpful Peer and Community Supports page.

Whipple disease varies between individuals, and each person’s experience is unique.

If you would like to share your personal story with RVA, please visit the Rare Voices Australia: Share Your Story page. RVA will consider your story for publishing on our website and inclusion on the RARE Portal.

For information on available government and social services that provide support for individuals with a rare disease, please visit the National and State Services pages.

People living with a rare disease, including families and carers, often face unique challenges such as diagnostic delays, misdiagnoses, limited treatment options, and limited access to rare disease specialists and support. These challenges may impact people’s emotional wellbeing and quality of life. Many people find it helpful to seek mental health and wellbeing support to cope with ongoing stress and uncertainty. Connecting with people who have shared experiences through a support group may also be helpful. Information about relevant mental health and wellbeing support can be found at:

• Mental Health and Wellbeing Support for Australians Living with a Rare Disease
• The National and State Services pages underneath the ‘Mental Health’ sections listed

Further information on Whipple disease can be found at:

• Genetic and Rare Diseases (GARD) Information Center: Whipple’s disease
• National Organization for Rare Disorders (NORD): Whipple Disease

StatPearls: Whipple Disease

Royal College of Pathologists of Australia: Whipple disease: A great mimicker

Barwon Health Research: Australian Rickettsial Reference Laboratory

Orphanet: Whipple disease

This page has been developed by Rare Voices Australia (RVA)’s RARE Portal team. If you would like to see more information added to this page, please reach out via the Contact form. If you would like to share relevant resources for this condition, please visit the Contribute page.

If you are aware of any additional information that may benefit stakeholders with an interest in this page, or if you notice any broken links or inaccurate information, please let us know via the Contribute page.