Skip to main content

Member story Ann Warnke on EPP

Ann Warnke


Erythropoietic Protoporphyria (EPP)

Living with EPP

Ann Warnke had her first symptoms of Erythropoietic Protoporphyria (EPP) when she was 13 years old. A friend of the family took Ann and some other kids deep-sea fishing, and after she got home that night, her face swelled up so much that she couldn't open her eyes and her nose disappeared. The capillaries under her skin burst too, so that she looked bruised as well as swollen. She says she looked "like I'd been beaten."

Her doctors first thought the swelling and bruising were a bad reaction to something she had eaten, and Ann would go on to have many more photosensitive incidents before she was finally diagnosed with EPP as an adult. Yet the knowledge of her own diagnosis allowed Ann's younger son to be diagnosed by the time he was three years old. Just like Ann, Matthew got to go out on a boat for the day with his dad, but the sun made his skin burn to the point that holding a hot dog was painful, and his ears turned inside-out from the swelling.

These days, both Ann and Matthew have their EPP well under control. They both use UV-protective clothing, and can even go skiing sometimes or take a cruise with the help of a face mask, an umbrella and pharmaceutical-grade beta-carotene. Ann notes that Matthew's diagnostic labs don't show such high numbers as her own, and that he appears to have milder photosensitivity than she does. But for both of them, a photosensitive reaction with EPP means swelling, itching and painful burning that can take five days to subside. During that time, the Warnkes turn the A/C down low, and use ice bags, Benadryl and Tylenol 3 to ease the pain.

Ann uses Lumitene (pharmaceutical-grade beta-carotene) if she needs to increase her sun tolerance without increasing the symptoms of EPP. At home, she prefers to cover up and avoid spending time outdoors in the sun, because taken over a lengthy period Lumitene turns her skin orange and gives her some gastrointestinal upset. But when going on vacation she'll begin taking Lumitene a few weeks before leaving home, continue throughout the vacation, and then taper off it after she comes home. She still covers up all the time, but she is able to stand more time in the sun with Lumitene.

Back home, Ann has special tinting on her windows to protect her from the sun's UV rays. APF Scientific Advisory Board member Dr. Micheline Mathews-Roth helped Ann with the window tinting and has gotten testing information to Ann's doctors. Ann calls Dr. Roth "just phenomenal, extremely good and accessible." Dr. Roth has been a wonderful resource both for the APF and for EPP patients.

Ann is a wonderfully positive person and has a fantastic attitude about dealing with her condition.

Comments

Popular posts from this blog

GLOBAL PORPHYRIA ALLIANCE

GLOBAL PORPHYRIA ALLIANCE The APF is proud to support our members that live across the globe. Many countries around the world have developed organizations to support their local communities. We hope that enjoy the same opportunity to communicate with one another, develop friendships, and learn about porphyria. Here are links to patient advocacy groups worldwide that offer support to individuals impacted by porphyria. Argentina: Centro de investigaciones sobre porfirinas y porfirias | More informationAustralia: Porphyria Association, Inc. | More informationBrazil: Associação Brasileira de Porfiria | More informationCanada: Canadian Association for Porphyria | More informationColombia: Fundación Colombiana Para La Porfiria | More informationDenmark: Porfyriforeningen.dk (Porphyria Association Denmark)Denmark: Porfyrier.dk (Danish Porphyria Support Group)England: British Porphyria AssociationFinland: Finnish Porphyria Support Group France: Association Française des Malades Atteints de Por…

WHAT IS NEUROPATHIC PAIN?

What could it be?
Nerve Pain WHAT IS NEUROPATHIC PAIN? Neuropathic or nerve pain (NP) is a long-term or chronic pain disease that results from nerve damage. It can be caused by different diseases or conditions. Worldwide nerve pain affects as many as 26 million people. Neuropathic or nerve pain may affect larger areas of the body or it can be restricted to a smaller area, in this case it is called localized neuropathic pain (LNP). WHAT CAUSES NEUROPATHIC PAIN? Neuropathic or nerve pain may occur in the absence of an obvious visible cause (e.g. an accident, an injury, a chemical burn). There are several external situations that can directly damage nerves and lead to neuropathic pain, such as: Amputation of a limb (phantom pain, stump pain)Surgery (scar pain, post-surgery pain)Trauma or accident Neuropathic pain is also a common complication of other diseases, including nerve damage after shingles or herpes zoster infection (postherpetic neuralgia or PHN), nerve damage after HIV infectio…

Happy Winter Season!

                  Happy Winter Season!