Living With PNH

Paroxysmal Nocturnal Haemoglobinuria (PNH) is a rare blood disorder, and living with it can feel challenging because it affects your red blood cells, your energy levels, and your risk of serious complications like blood clots or infections.

PNH patients often have questions about how their condition impacts their day-to-day lives. This page seeks to answer some of the most common questions.

Pregnancy and PNH

Many women with PNH wonder whether pregnancy is possible. The good news is that, although pregnancy may increase certain health risks in PNH patients, pregnancy can be achieved safely with the right support and monitoring.

If you have PNH and are considering pregnancy, the first step is to talk with your PNH specialist. Together you can discuss your overall health and plan an approach to pregnancy that supports the health and wellbeing of both you and your baby. It is important to know that PNH is not hereditary, so it cannot be passed on to your child.

Pregnancy in women with PNH is considered higher risk which means extra monitoring and specialist support are extremely important. Your pregnancy is usually guided by a team that includes your PNH specialist and your maternity team. This collaboration ensures that your health is carefully watched at every stage and that any issues are managed promptly.

Travel Insurance & Holidays

Travelling with a blood condition like PNH or aplastic anaemia (AA) is possible but it is important to talk to your healthcare team before arranging anything. Your PNH consultant or specialist nurse can give you advice on your fitness to travel and how to manage your medication while away.

There are several specialist insurers who understand rare blood disorders. Always tell the insurer about your PNH or AA to ensure your holiday is properly covered. Please let us know of any companies you have used that you would recommend or if you have had any issues. Update us on the questions you were asked so we can let others know what to expect.

Insurance Companies Recommended by PNH patients

Sample PNH Travel Insurance Questions

source: loveit coverit

  1. Has this led to bone marrow failure or leukaemia?

  2. Have you required any blood transfusions in the last 12 months?

  3. Has this led to any blood clots?

Follow-up questions if answering ‘yes’ to blood clots:

  1. Where was the thrombosis (blood clot)?

  2. Are you still taking anticoagulant (blood thinning) medication for this condition?

  3. How many thromboses (blood clots) have you ever had?

  4. Do you have a blood disorder which makes your blood more likely to clot?

Lifestyle and Practical Tips

Regular Appointments
Maintain regular appointments and blood tests to monitor your condition.

Plan Ahead
Some days may require rest or flexibility.

Mental Health & Wellbeing
Talking to medical professionals and fellow PNH patients can provide help and reassurance.

PNHCA have compiled a helpful set of resources: ‘Better Living With PNH’

This five part resource aims to provide a holistic approach to improving your wellbeing as a PNH patient.

Thank you to PNHCA Canadian Association of PNH Patients for very kindly providing these resources to PNH Scotland.

Learn more

PNHCA have compiled a helpful set of resources: ‘Better Living With PNH’

This five part resource aims to provide a holistic approach to improving your wellbeing as a PNH patient.

Thank you to PNHCA Canadian Association of PNH Patients for very kindly providing these resources to PNH Scotland.

Related Topics

Patient Stories

These stories share the real experiences of people affected by PNH in Scotland. Explore their first-hand experiences.

Find Out More

PNH Care in Scotland

PNH care in Scotland is based on a shared-care model. Find out more abut PNH care in Scotland on this page.

Find Out More

Better Living With PNH

An excellent guide provided to PNH SCotland by The Canadian Association of PNH Patients (PNHCA).

Find Out More