How porphyria can impact sleep (and what to do about it)

Porphyria refers to a group of rare metabolic disorders that disrupt the body’s ability to produce heme. Heme is a major component of red blood cells and enables red blood cells to bind to oxygen molecules, so oxygen can be transported throughout the body.

The process by which the body makes heme involves eight separate enzymes, called porphyrins. When a person has porphyria, the body is unable to complete the process of making heme. As a result, porphyrins accumulate in the body. This can lead to a number of serious health problems that can affect the nervous system, the skin, or both.

The symptoms a person experiences will depend on the type of porphyria they have, and the type of porphyria depends on the part of the heme-synthesizing process that isn’t working.

Having a type of porphyria can impact a person’s life in many ways—the foods they eat, the activities they participate in, the types of medications they can take.

Porphyria can also interfere with a person’s ability to get enough sleep. Below, we look at the relationship between porphyria and sleep, with strategies that might help if you are struggling to get enough sleep.

Porphyria and sleep disturbances

Sleep is an essential part of a healthy lifestyle. Getting adequate amounts of sleep is associated with better immunity, better cardiovascular health, better memory, better decision making, and better moods.

Conversely, too little sleep is associated with a list of things people want to avoid—getting sick more often, an increased risk of cardiovascular disease and type 2 diabetes, an increased risk of accidents, and poorer mental health.

Unfortunately, many people with porphyria have difficulty sleeping. Some might experience symptoms that disrupt sleep—pain, tingling, numbness, irregular heartbeat, itching, blistering, and other skin symptoms are a few examples. There is also research that suggests that porphyria may disrupt hormonal balances and circadian rhythm (the body’s internal clock), which can also disrupt sleep.

Even when symptoms are under control, there is also the innate stress of living with a chronic health condition—one that is often unpredictable. It can be difficult to unwind and relax when you are wondering when symptoms are going to flare or how you are going to stick with your eating plan during an upcoming holiday dinner.

Work with a healthcare provider

Porphyria is a lifelong condition that requires ongoing management. As someone living with porphyria, the best thing you can do for your health is work with a healthcare provider and follow treatment.

Treatment for porphyria will vary depending on the type of porphyria you have. But all treatment plans have two basic components—preventing attacks and being prepared to treat an attack if it occurs.

Treatment typically involves working with porphyria specialists or porphyria clinics, but because these are in limited supply—porphyria is, after all, a rare condition—a primary care provider will also play a key role, helping to coordinate and oversee care and treatment.

Your healthcare providers are also there to help you address other problems that impact your health and may impact your porphyria management. If you are having trouble falling asleep or staying asleep, if you find that you are waking too early in the morning, or if your energy levels are low, tell your healthcare providers.

Improve your bedtime habits

In addition to working with your healthcare providers and following your treatment plan, there are a number of steps you can take that may improve the quality of your sleep. Here are some suggestions:

• Going to bed and waking at the same time every day, even on weekends.
• Putting away electronic devices 30 minutes before bed (at least) and leaving devices (including TV) out of your bedroom.
• Limiting your consumption of alcohol and caffeine. If you smoke—or vape, or use any nicotine product—quit. Your healthcare providers can help.
• Keeping your bedroom dark and at a comfortably cool temperature.
• Avoiding large meals and fluid intake too close to bedtime.
• Taking steps to reduce stress, whether it’s something like practicing meditation or simply scheduling some time to unwind.
• Regular exercise is good for sleep, good for stress levels, and good for overall health. Talk to your healthcare provider about how to exercise safely while living with porphyria.