Porphyrias that cause skin problems are known as cutaneous porphyrias. The skin problems are caused by an increase in chemicals called porphyrins circulating in the bloodstream. These porphyrins reach the skin, where they absorb energy from visible light and trigger a phototoxic reaction. There are two main types of skin reactions in the cutaneous porphyrias; fragile skin with blistering, and acute painful photosensitivity.
2. Will I have skin problems for the rest of my life?
In many cutaneous porphyrias, it is not currently possible to reduce the circulating porphyrins associated with the skin problems, although research is underway which is exploring potential treatments that would do this for those with erythropoietic protoporphyria (EPP) and X-linked erythropoietic protoporphyria (XLEPP).
The severity of symptoms can vary greatly between individuals. Skin problems in some patients with can resolve spontaneously.
Effective treatments are available for porphyria cutanea tarda (PCT). These can reduce circulating porphyrin levels to normal and allow skin problems to resolve. In most patients, symptoms will not return, unless there is a relapse in the condition which has caused the PCT.
In both EPP, XLEPP and congenital erythropoietic porphyria (CEP) skin symptoms are generally present throughout life.
There are some practical measures that people with cutaneous porphyria can take to reduce the effects caused by photosensitivity.
3. How can I reduce exposure to sunlight?
Patients with porphyrias that cause fragile skin and blistering may not realise that their symptoms are caused by light exposure. Because the damage develops gradually, the connection with sunlight is not always obvious.
This is very different from EPP, XLEPP and to a certain extent CEP, where symptoms can develop within minutes of light exposure.
Practical measures include:
- Avoiding the brightest time of the day outdoors (11am-3pm). There may be occasions when bright artificial lights need to be avoided as well.
- Seeking shade wherever possible.
- Being aware that light reflects from different surfaces (e.g. sand, water, snow and concrete) and you may not be protected even under a parasol, as light bounces in many directions from these surfaces.
- Making sure desks (at school or work) are away from unshielded windows.
- Physical barriers to light exposure as described below.
4. Physical barriers to light exposure
- Clothing should be made from tightly woven fabrics that limit the passage of light (check by holding up to light and see how much shines through – less is better). Avoid thin, light coloured fabrics. Loose-fitting long-sleeved tops and long trousers in darker colours give good protection. Shirts with collars and scarves can help to protect your neck. Clothes give less protection if they are tight fitting and become wet or stretched.
- Hats should be broad brimmed and dark in colour to protect your nose, ears and neck. Baseball caps expose your neck and straw hats let too much light through.
- Avoid open toed shoes such as sandals or flip-flops.
- Consider wearing gloves when exposed to sunlight, particularly when skin is already damaged and fragile.
- Most over-the-counter sunscreens are designed to protect against ultraviolet (UVA & UVB) light and will not provide adequate protection in cutaneous porphyria, because porphyrins are activated mainly by visible light. Some sunscreens contain zinc oxide, which can also block part of the visible light spectrum and may offer additional protection. Look out for products that contain zinc oxide or sunscreens that are designed to cover a broader light range, including the High-Energy Visible (HEV) light range (often called blue-violet light) which encompasses around 380 to 500 nm in the visible spectrum. These may offer some protection for those with skin porphyrias.
- Window films: Only UVB is blocked by clear windows; UVA and visible light will penetrate clear glass. Specialist clear window film blocks UVA, but not visible light and may offer some protection (e.g. Dermagard, UVCL). The most effective film for visible light induced cutaneous porphyrias is amber tinted specialist window film (ARC UVTA, TA81 Madico). Suppliers may differ in other countries.
- Car windows: The regulations for car window screens should be checked in your own country. As an example, in the UK window films must transmit 75% of light through the windscreen and 70% through front side windows. There are no restrictions for rear car windows, but this should be checked in other countries.
- Umbrellas with a dark or reflecting surface.
5. How can I protect my skin further?
Fragile skin occurs in areas exposed to visible light; most commonly the backs of the hands, forearms, feet, face and scalp. Prevention through photoprotection with clothing and visible light blocking sunscreen is effective in some patients.
The backs of the hands are particularly vulnerable to damage and gloves should be worn in direct sunlight, and in the blistering porphyrias when undertaking manual tasks. There are a variety of options available, from heavy duty work gloves (e.g. for gardening) to cotton gloves for lighter work.
If blisters occur, particularly if they are large or painful, advice should be sought from a healthcare professional. If you feel able, large or painful blisters may be drained with a sterile needle while leaving the overlying skin in place as a natural dressing. This decreases the likelihood of further skin damage and secondary infection. Regular hand washing will reduce the risk of skin infections and applying an emollient after washing may also act as a barrier to protect your skin.
6. Why is Vitamin D important?
Vitamin D is essential for healthy bones, teeth and muscles. Low vitamin D levels can result in illness (e.g. osteoporosis/osteomalacia in adults and rickets in children). Sunlight avoidance and photoprotection in cutaneous porphyrias can lead to vitamin D deficiency, because sunlight is an essential component in the body’s production of vitamin D.
You should have your vitamin D level checked at least annually. Levels are lowest in the winter months, but cutaneous porphyria patients should take supplementation throughout the year. The dose of vitamin D supplement needed will depend on your blood vitamin D level and how well it responds to treatment. Many patients require long-term supplements of 1000 International Units (25 microgrammes) of vitamin D3 daily. A bone density scan should be considered at least once in people with long-term low sunlight exposure.
7. What treatments are available for cutaneous porphyria?
See advice in disease specific patient information on porphyria cutanea tarda (PCT), congenital erythropoietic porphyria (CEP), erythropoietic protoporphyria (EPP) and X-linked erythropoietic protoporphyria (XLEPP).
8. What other action can I take?
Porphyrias are rare diseases, which may not be well understood by the wider public and other people may not be aware of how to offer support, particularly at school or in the workplace. Your porphyria specialist should be able to provide a letter to your employer, school or college explaining your diagnosis and recommending measures to reduce symptoms and support participation at work or education.
Patient associations can be a good point of contact for information, networking and support. Global porphyria patient groups are listed on the International Porphyria Network web site and the Global Porphyria Advocacy Coalition (GPAC) website.
Revised April 2026