Written for children, young people and their families

What are the aims of this leaflet?

This leaflet has been written to help you understand more about a group of rare skin conditions called lymphoproliferative skin conditions.

The word “lympho-” in “lymphoproliferative” is about lymphocytes. Lymphocytes are a type of white blood cell, which protect your body from infections like the flu and COVID. The word “-proliferative” means quick growth or increase in number. Taken together, it means that these cells quickly grow in number. In lymphoproliferative skin conditions, a lot of these white blood cells are found in the skin.

There are different lymphoproliferative skin conditions, which are known by long Latin names, including:

• Lymphomatoid papulosis (LyP)
• Pityriasis lichenoides chronica (PLC)
• Cutaneous T-cell lymphoma (CTCL)
• Mycosis fungoides (MF) - This is the most common type of CTCL

This leaflet tells you what these conditions are, what can be done about them and how you can find out more about them.

What happens in lymphoproliferative skin conditions?

These conditions can happen on skin on any part of the body. Increased numbers of white blood cells build up in the skin.

These conditions can affect people in different ways. This leaflet contains information on all of these conditions, but not all of the information may be relevant to you.

Some forms can involve inflammation of the skin (redness, swelling, itching, burning, and heat), such as lymphomatoid papulosis.

Some forms such as cutaneous T-cell lymphoma may be cancerous, meaning cells grow and multiply out of control. While some types of cancer can spread to other parts of the body, this is typically not the case for lymphoproliferative skin conditions.

What are T-cells and what are they doing in the skin?

T-cells are one type of lymphocyte, which themselves are a type of white blood cell. They are part of the immune system and help to recognise and fight infections in your body. They are found in the blood and travel around the body, and it is normal for some of them to be in the skin.

But there are a number of conditions where T cells are found in higher numbers than normal in the skin:

• Inflammatory conditions such as eczema when the skin  can change colour, become red or darker or paler, and possibly hot and itchy, and
• cancerous skin conditions, such as lymphoproliferative conditions where the T-cells are abnormal.

Cancer and lymphoma sound like scary words. You may have heard of a condition called lymphoma, which is a cancer of the lymph nodes (glands). This is a more serious condition that requires treatment with chemotherapy.

Skin lymphoma (also known as cutaneous T-cell lymphoma, CTCL or mycosis fungoides) is a very different type of lymphoma which is limited to the skin for most people - it does not usually spread to involve the glands or the inside of the body. Although some lymphoproliferative conditions are thought to be forms of cancer, these are usually very stable conditions. It is very unlikely that you will need treatments such as chemotherapy or have any long-term harm to your health.

What causes lymphoproliferative skin conditions?

The cause for the growth of T-cells is unknown, but it is certainly not your fault or due to anything you have done wrong.

You cannot catch it from someone else, or pass it on to others, because lymphoproliferative skin conditions are not infectious.

Are lymphoproliferative skin conditions inherited?

No, they cannot be passed on from parents to their children.

What do lymphoproliferative skin conditions look like?

This will depend on the type of skin condition and the colour (pigment) of your skin. A lymphoproliferative condition can include pale (hypopigmented) areas, dark (hyperpigmented) areas, dry scaly areas, spots or bumps, which can appear red or darker than the surrounding unaffected skin. Sometimes, the area of skin affected can become lumpy, or the skin can break on the surface (also known as an ulcer). Some lymphoproliferative conditions can also look like more common skin conditions such as eczema or psoriasis.

What are the symptoms of lymphoproliferative skin conditions?

The skin may feel normal but can also be flaky, itchy or sore in the affected areas. For some people, the way their skin looks can be upsetting.

How will lymphoproliferative skin conditions be diagnosed?

If your doctor thinks you are affected by a lymphoproliferative skin condition after examining your skin, then a biopsy may be needed to confirm the diagnosis. To take a biopsy, the skin is numbed with an injection (known as local anaesthetic), so you don’t feel anything.  A small part of the skin is then cut out to be looked at under the microscope.

It can take a long time (months or even years) for a doctor to make a diagnosis. A diagnosis means that the doctor knows for sure it is a lymphoproliferative skin condition. This is because the rash can look like other skin conditions, such as eczema and psoriasis. Usually they need to take a skin biopsy to confirm the diagnosis. However, skin biopsy results may also look similar to other skin conditions, making it difficult to know for sure. Skin biopsies may have to be done more than once over a number of months or years before a final diagnosis can be made.

The doctor will also need to see how your skin looks and what it feels like to make a diagnosis.

The doctor may want to take blood tests, but usually the results of these are normal. If your doctor thinks something else may be wrong, sometimes other tests (such as a scan) may be needed. However, for most people these are not needed.

Can lymphoproliferative conditions be cured?

Some types of lymphoproliferative conditions will get better over time, for example pityriasis lichenoides chronica (PLC). Some conditions may be persistent, lasting for years and never going away completely. Some may slowly spread and get worse over months or years.

There are treatments that can help improve your symptoms and how your skin looks. Although they may help control the condition, these treatments do not always change how long it lasts or what will happen in the long term. Remember - these conditions can be different from person to person and are very rare. Because of this, it can be difficult for your dermatology team to know for sure which type it is. It may also be difficult to know what might happen in the future, which can be unsettling. However, we do know that in children and young people it is extremely unusual for these skin conditions to cause serious problems or affect your general health. This is the case even if you are diagnosed with a cutaneous T-cell lymphoma.

How can lymphoproliferative conditions be treated?

The aim of treatment is to improve symptoms and to control the condition. Treatment, therefore, depends on the symptoms, how much they are bothering you and how much and what part of the skin is involved.

Applying moisturisers regularly can help reduce skin dryness and irritation. People find different moisturisers helpful, so it is worth trying a selection of creams or ointments until you find one that suits you. We suggest talking with your doctor about this.

It is completely normal to be upset by how your skin looks.  If this is worrying you, please do talk about this when you are seen in the doctor’s clinic for advice and support.

Depending on the background pigment (colour) of your skin, fake tan moisturising products can be useful cosmetically for some people.

Most patients will only ever require ‘skin-directed therapy’. These are treatments that only treat the skin and include:

• Steroid creams or ointments. It is important that these are used correctly. Your doctor or nurses at the dermatology (skin) department or skin lymphoma clinic will be able to advise you about this.
• Phototherapy (NB-UVB): This treatment uses ultraviolet light to treat all of the skin.
• Radiotherapy: Very rarely, patients may need treatment with radiotherapy on areas of affected skin that are causing symptoms and have not gotten better with other treatments.

If skin-directed therapy does not help control the condition that is affecting you, other treatment may be needed. In this situation, treatment will be discussed with a medical team that specialises in skin lymphoma. This is to agree upon a treatment plan that is more suitable for you.

Self-care (What can I do?)

These conditions are not affected by what you eat or drink, so no special diet is needed. There will usually be no restrictions on your day-to-day activities so you can continue to take part in your hobbies, school and social activities.

If you or your family are worrying a lot about your skin, then you should talk to your doctor about this. It may be helpful to get support from a specialist, such as a psychologist.

Where can I get more information?

It can be difficult to find the right information as these conditions are rare and different from person to person. These conditions behave differently (and could be more severe) if they start in adults, so information for older people will not apply to you. We would suggest you talk to the dermatology team who is supervising your care if you have any questions.

This leaflet aims to provide accurate information about the subject and is a consensus of the views held by representatives of the British Society for Paediatric and Adolescent Dermatology and the British Association of Dermatologists: individual patient circumstances may differ, which might alter both the advice and course of therapy given to you by your doctor. 

This leaflet has been assessed for readability by the British Association of Dermatologists’ Patient Information Lay Review Panel 

BRITISH ASSOCIATION OF DERMATOLOGISTS PATIENT INFORMATION LEAFLET

PRODUCED | JANUARY 2023
UPDATED | SEPTEMBER 2026
NEXT REVIEW DATE | SEPTEMBER 2029

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