Human T-lymphotropic virus 1 (HTLV-1)

Human T-cell lymphotropic virus type 1 (HTLV-1) is a virus that infects T-cells. T-cells are a type of white blood cell and are part of your immune system.

Most people with the virus don't have symptoms. Infection may lead to serious illness.

There is no cure or vaccine for HTLV-1. Taking careful steps can help reduce the risk of spreading it.

HTLV-1 in Australia

HTLV-1 virus is found in many countries, including Australia.

In Australia, it affects Aboriginal and/or Torres Strait Islander people more than others. In some communities in central Australia, up to 1 in every 2 adults have the virus.

Most people with HTLV-1 don't have symptoms. It can take 10 to 40 years for symptoms to appear. This time is called the incubation period.

Health conditions related to HTLV-1

There are serious health conditions that are caused by or related to HTLV-1. These conditions may have symptoms that suggest you have the virus.

HTLV-1 is related to serious health conditions, such as:

• adult T-cell leukemia/lymphoma (ATLL) — a type of cancer that affects your blood and lymph nodes. This may lead to swollen lymph nodes (glands), an enlarged liver or spleen and high calcium levels in your blood.

• HTLV-1-associated myelopathy (HAM/TSP) — a condition that affects your nervous system. This may lead to leg weakness, muscle stiffness, lower back pain and bladder or bowel issues.

People with HTLV‐1 infection may also experience more severe infections such as uveitis (inflammation in the eye).

HTLV-1 is mainly spread through direct contact with body fluids, such as blood, breast milk and semen. You can get HTLV-1 from an infected person by:

• having unprotected sex
• sharing needles
• breastfeeding
• contact with infected blood

You cannot catch HTLV-1 from:

• shaking hands
• hugging
• kissing
• sharing a glass
• coughing

You should see your doctor if you notice any symptoms that may be related to HTLV-1, especially if you live in an area where the virus is common.

It's also important to see your doctor if you have HTLV-1 and are planning a pregnancy, especially if you live with someone who has the virus. Your doctor can advise you on ways to reduce the risk of spreading the virus to your baby.

HTLV-1 is diagnosed with a blood test that detects antibodies to the virus.

Australian blood donor centres screen blood for HTLV-1 infection.

There is no treatment for HTLV-1.

Treatment is available for some of the complications of HTLV-1.

Living with HTLV-1

Living with HTLV-1 means managing your risk of developing related health issues. It involves taking steps to protect your health and prevent spreading the virus to others. This includes practicing safe sex and not donating blood or organs.

If you are pregnant, speak with your maternity care provider about if its safe for you to breastfeed.

It's important to monitor your health and have regular check-ups with a healthcare provider.

There are several complications of having the HTLV-1 virus. For people with HTLV-1, some infections such as roundworm and scabies can become more severe.

There are 2 main conditions linked to the virus:

• ATLL — a type of blood cancer
• HAM/TSP — a spinal cord disease that causes muscle weakness

Other conditions associated with HTLV-1 are:

• inflammation of the eye — HTLV-1 uveitis
• skin conditions — such as seborrheic dermatitis
• lung problems — such as bronchiectasis, bronchitis and bronchiolitis
• autoimmune disorders — such as Sjögren's syndrome and rheumatoid arthritis
• fibromyalgia — a condition that causes pain and muscle stiffness
• ulcerative colitis — a type of bowel disease

You can reduce the risk of catching or spreading the HTLV-1 virus by:

• practising safe sex, such as using a condom
• not sharing needles
• not donating blood if you have the virus
• bottle feeding (Opens in new tab) your baby, or freeze-thawing breast milk (Opens in new tab)

Once you have HTLV-1, you can pass it on to other people for the rest of your life.

If you are planning a pregnancy or want to feed your baby breastmilk, talk to a midwife (Opens in new tab), nurse or doctor who has experience with HTLV-1 infection.

There is no vaccine against HTLV-1.

The Government of South Australia has information on:

• HTLV-1 (Opens in new tab)
• preventing sexually transmitted infections (Opens in new tab)
• safely handling blood and other body substances (Opens in new tab)

You can read more about blood cancer on the Leukaemia Foundation website (Opens in new tab).

You can also call the healthdirect helpline on 1800 022 222 (known as NURSE-ON-CALL in Victoria). A registered nurse is available to talk with 24 hours a day, 7 days a week.

Looking for information for Aboriginal and/or Torres Strait Islander people?

• Australian Indigenous HealthInfoNet (Opens in new tab) has HTLV-1 resources (Opens in new tab) relevant for Aboriginal and/or Torres Strait Islander communities.
• Find an Aboriginal Community Controlled Health Organisation (Opens in new tab) (ACCHO) or Affiliate near you.