A life in the shadow - Erythropoietic Protoporphyria (EPP)

Continuing and persistent burning pain, isolation and a lack of understanding from peers has a long term impact on patients diagnosed with erythropoietic protoporphyria (EPP). For Lyndal, 24, the disease has led to severe depression.

EPP can be defined as absolute light intolerance. Exposure of Lyndal's skin to sunlight results in severe burning pain, swelling and scarring caused by a phototoxic reaction. Throughout her life, Lyndal has endured countless painful reactions to sunlight.

With no effective treatment available for EPP, the only option is to avoid sunlight, a next to impossible task. The result is a life led in social isolation, sitting on the sidelines, an existence in the shadow.

The acute phototoxic reactions experienced in EPP can be invisible; those with EPP are often misunderstood or labelled as hypochondriacs when they explain their condition, even by close family or friends. The disease is misunderstood and causes social isolation and severe invisible pain which greatly impacts upon the quality of life of those living with EPP.

Learn more about EPP: http://www.clinuvel.com/en/erythropoi...

Lyndal is the daughter of Ralph and Wendy, who have shared their story on raising two daughters with EPP here    • "The fear of what lay ahead" - Erythr...  

For help or information visit http://www.beyondblue.org.au, call Suicide Helpline Victoria on 1300 651 251, or Lifeline on 131 114. Teenagers experiencing personal problems can call Kids Help Line on 1800 55 1800. Victorian Suicide HelpLine on 1300 651 251; Lifeline on 13 11 14; SANE Helpline on 1800 187 263 or visit http://www.kidshelpline.com.au, http://www.headspace.org.au, http://www.suicideline.org.au