Caring for the Skin In VP
&
Other Cutaneous Porphyrias

Structure of the Skin

These patients have gladly agreed to allow us to publish their personal collection of photographs of their skin to highlight the importance of taking precautions to protect the skin.

Photo of Scars on upper back, shoulder area

This patient had prolonged stress, triggering severe & uncontrollably itchy skin, constant scratching over a two year period resulted in deep scaring. Before the wounds were able to heal the cycle started again resulting in more damage & bacterial infections. Note: Photos are subject to Copyright

Open Sore on the Hand

This photo shows how a simple task performing household chores has resulted in accidentally bumping the hand and tearing the skin. Note: Photos are subject to Copyright.

Lesions & Scars on the forearm

This picture depicts how fragile the skin is, the smallest scrape and the result is an open sore which is slow to heal. Note: Photos are subject to Copyright.

Skin Lesions & Blistering

A VP patients hands showing skin lesions and blistering on exposed areas of the back of the hands. The blisters are filled with clear liquid, when they burst the liquid often has a burning sensation when in contact with the surrounding skin. Note: Photos are subject to Copyright.

Skin on Back of The Hand

VP Patient's hand showing typical lesion. The skin on the back of the hands is prone to developing milia as well as blistering. The skin often shows signs of thickening in areas. Note: Photos are subject to Copyright

Scaring In a VP Patient

This picture depicts the back of the patient's arm. Because the skin of a VP patient is so reactive to sunlight, fluorescent lighting, stress and chemicals, causing intense itching, when scratched the skin will itch even more, resulting in a cycle of scratch / itch. The fragile skin is easily broken by scratching, resulting in open wounds, prone to bacterial infections, slow to heal and resulting in severe scaring. Note: Photos are subject to Copyright.

Back of The Upper Arm

Scaring in this case was the result of intensely itchy skin, triggered by long term stress combined with exposure to fluorescent lighting in an open plan office with low ceilings. The patient desk was directly under the fluorescent bulb. Note: Photos are subject to Copyright.

Upper Arm of VP Patient

This patients upper left arm suffered severe scaring from itchy skin. The patient was in a highly stressful job at the time, resulting in constantly itchy skin. The skin is slow to heal from lesions, providing the perfect conditions for bacterial infection to set it. Note: Photos are subject to Copyright

Hands with Lesions

Patient with typical VP skin lesions & blisters. Note: Photos are subject to Copyright

Many people with VP have skin that is overly sensitive to sunlight, the exposed areas of the skin are prone to blistering, scaring, slow to heal skin, pigmentation, milia and an increased hair growth.

The lesions result from sun exposure that activates porphyrins and makes the skin fragile and prone to blister formation. 

Photosensitive skins in the Porphyrias are easily damaged, prone to bruising and skin lesions. A slight bump or knock can break open the skin which often is paper-thin. When the blisters rupture they can often be painful and prone to infections. 

It is important to care for the skin, lesions or open sores are easily prone to bacterial infections, thus emphasis must be placed on hygiene, clean any open sores and cover with gauze or plaster to avoid bacterial infections as these are often triggers in the acute attack. 

Prevention is better than cure; make use of rubber gloves when doing dishes or household cleaning, they will offer good protection for the skin. 

Ensure your skin doesnt come into contact with any harsh substances which are likely to irritate the skin.

From personal experience I have found that my skin is very dry, very easily irritated and reactive to all sorts of products including environmental factors such as seasonal weather etc.

 

Regular soap for bathing is out of the question for me, I use a body wash with occlusives, which are known to lock in hydration. An occlusive ingredient provides a protective seal over the surface of the skin which prevents loss of hydration and help keep out irritants, allergens and other harmful substances.

Often patients have found that overheating, sweating when exercising or exerting oneself can cause the skin to itch or break out in hives. Scratching the sensitive skin can lead to breaking open the skin which in turn then is prone to bacterial infections and scaring.

Avoid scratching the skin, we understand that's easier said than done, many of us with VP have scratched our skin till its raw and bleeding and today we bear the testament to this in the form of terrible scaring.

Protect your face, ears and neck from sunlight, and whilst on the subject of sunlight, make sure that you have sunglasses....these will offer protection for the eyes which seem to be highly sensitive to light.

By Lynn Croker