Living with APS

Living with a long-term condition means that you may have to make some adjustments to your life, and APS is no exception. By making certain adjustments you should be able to help stabilise your condition, reduce symptoms and increase your overall well-being.

Due to the unpredictable nature of the condition, people can be affected very differently so it is likely that not all the topics mentioned here will apply to you, particularly if you are not being treated with warfarin. However, we aim to look at common issues which affect most people, and to offer advice and practical suggestions on how you can help improve your life including:

Life insurance

While travel insurance may cover individuals with APS, obtaining life insurance with an APS diagnosis can prove challenging.

Providers may automatically reject an application for a pre-existing condition such as APS, and other policies may be unaffordable…

Women's health

Women who are taking antithrombotics such as aspirin, warfarin or especially DOACs may experience problems with increased bleeding.

Heavy blood loss can be extremely inconvenient and uncomfortable, and it can also cause iron deficiency anaemia…

Driving

Many APS patients are concerned about their safety to drive and whether they need to declare their condition to the DVLA.

Despite the DVLA listing a vast number of health conditions that you have to declare, antiphospholipid syndrome is not included…

Medication

The type of medication you can take to treat other conditions will depend on the type of treatment you are prescribed for APS.

You must let your GP/pharmacist know if you buy any over-the-counter medicines to check for contraindications…

Diet

Anyone with APS is advised to eat a healthy balanced diet of good carbohydrates, protein, low-fat dairy products and fruit and vegetables.

Maintaining a healthy weight is important both in terms of reducing cardiovascular risks and easing pressure on your bones and joints…

Stopping smoking

Smoking is even more dangerous if you have APS because it causes cardiovascular disease.

Smoking accelerates the hardening and narrowing of your arteries, which means you are two to four times more likely to develop a blood clot…

Exercise

There are no specific guidelines for people with APS, as the level of exercise you are capable of will depend on how your symptoms affect you.

Many people with APS lead extremely active lives and continue playing sports, while others are much more restricted…

Coping with fatigue

Most patients with APS will find they suffer from fatigue at some point. Fortunately, the fatigue does not tend to be constant and many people find they have good and bad days.

Fatigue is characterised by a lack of energy and motivation…

Managing memory problems

Many people with APS will have some degree of memory loss and difficulty in thinking clearly; the sensation has been described as ‘brain fog’.

Memory loss can range from mild, such as difficulty finding words and absent-minded forgetfulness, to severe…

Dealing with stress

Living with APS can be mentally and physically challenging, with potential psychological consequences.

The condition’s unpredictable nature and serious complications can leave you feeling shocked, angry, depressed, and frustrated…

Air travel

Air travel is closely associated with deep vein thrombosis (DVT), particularly long-haul flights.

The number of people who get DVT from air travel is difficult to determine, simply because the condition can be symptomless and may not occur for some time after travel…

Resources

We have provided the following free resources about different aspects of APS for you to either download, print or share.

Diagnosis and treatment

APS is usually diagnosed from a combination of a positive blood test and symptoms. If you are under 50 and have suffered a thrombosis, or have had more than one pregnancy loss, you should discuss with your doctor whether you need blood tests.

Related conditions

Some people with APS will also have other autoimmune conditions, as may their family members. APS has been linked with many other autoimmune conditions, including rheumatoid arthritis, lupus, Raynaud’s phenomenon, and Sjögren’s syndrome.

Newly diagnosed

Receiving a new diagnosis of APS can be frightening, and no doubt you will want to know exactly what APS is. Following this, you will likely have a great many more questions to ask about the condition and how it can affect you. We are here to help!

About us

We're here for you

Our mission is to achieve earlier diagnosis and offer support to anyone affected by antiphospholipid syndrome (APS) through awareness, education and research.

We need all of the support that we can get

Why not join us and help make a difference?