Does lymphoedema run in families?

Primary lymphoedema can run in families, while secondary lymphoedema does not.¹²

Primary Lymphoedema (Hereditary/Genetic)

• Inherited traits: Primary lymphoedema happens because of genetic mutations that affect how the lymphatic system develops or drains fluid.¹²
• Family patterns: It often runs in families (frequently passed down as an autosomal dominant trait), though not every child in a family with the gene will develop symptoms.¹²
• Types: Examples include Milroy's disease (congenital) and Meige's disease (onset around puberty).¹

Secondary Lymphoedema (Acquired)

• External causes: This is the most common type and is caused by outside damage to a normal lymphatic system, such as surgery, lymph node removal, radiation therapy, infections (like filariasis), or tumors.
• Not inherited: It is not passed down through genes.¹²³

You can learn more about general causes and management from the NHS Lymphoedema Guide.¹If you'd like to share:

• Are you asking because you or a family member has lymphoedema?
• Is it primary (present from an early age) or secondary (after surgery or treatment)?

I can give you more specific information or guidance.

Yes and no—it depends entirely on which type of lymphoedema you are dealing with.¹

The condition is split into two distinct categories:

1. Primary Lymphoedema (Can run in families)

• What it is: Caused by genetic alterations or mutations that mean the lymphatic system didn't develop or function properly from the start.¹
• Is it inherited? Often, yes. It can be passed down from a parent, or happen due to a new (spontaneous) genetic change in the individual.¹²
• The catch: Not everyone with a genetic predisposition will actually develop the swelling, and about 70% of primary lymphoedema cases happen sporadically with no known family history.¹²
• Examples include: Milroy disease (congenital) or Meige disease (which typically appears around puberty).¹

2. Secondary Lymphoedema (Does not run in families)

• What it is: Happens when a person is born with a totally normal lymphatic system, which is later damaged by an external cause.
• Is it inherited? No. You cannot pass secondary lymphoedema to your children.
• Common causes include: Cancer treatments (like lymph node removal or radiation), severe infections, trauma/injury, or chronic venous insufficiency.¹

Key Takeaways at a Glance

• Family link: Only primary lymphoedema has a genetic/hereditary component.
• Inheritance pattern: Many hereditary forms follow an autosomal dominant pattern (meaning a 50% chance of passing the gene variant on to a child, though not everyone with the gene expresses symptoms).
• Most common type: Secondary lymphoedema is vastly more common overall, meaning the majority of cases seen in day-to-day life are not inherited.¹²

More details on how the body processes fluid and genetic causes can be found via the NHS Lymphoedema Guide and the NORD Rare Disease Database on Hereditary Lymphedema.¹

Are you asking because you or a family member are experiencing swelling, or are you looking into a specific genetic diagnosis like Milroy disease?

Yes. Lymphoedema can run in families, but it depends on which type of lymphoedema a person has.

There are two main types:

1. Primary lymphoedema – can be inherited

• Caused by genetic changes affecting how the lymphatic system develops or works.
• It can be passed down through families.
• It may appear at birth, during childhood, puberty or even adulthood.
• Not everyone who inherits the genetic change will necessarily develop symptoms.

2. Secondary lymphoedema – usually not inherited

This is much more common and develops when the lymphatic system becomes damaged or its drainage is affected.

Possible causes include:

• Cancer surgery or removal of lymph nodes.
• Radiotherapy.
• Infection.
• Injury or trauma.
• Obesity or problems with veins.

These causes aren't inherited, although some underlying risk factors may run in families. www.nhs.ukwww.nhsinform.scotwww.nhs.uk

What if several family members have it?

If lymphoedema affects a parent, sibling, grandparent or other relative, it's worth mentioning this to your GP. Depending on the circumstances, a specialist assessment or genetic testing may be appropriate. www.genomicseducation.hee.nhs.ukwww.england.nhs.uk

Can I ask you two questions?

I'm interested in whether you're asking because:

1. You have lymphoedema and are wondering whether your children might develop it.
2. Several people in your family have lymphoedema.
3. You're experiencing swelling and wondering whether it could be hereditary.

The distinction is important because it can help establish whether there's a genetic link.