Suffering as bad as it gets; Erythropoietic Protoporphyria

Written by on February 11, 2010 in melanotan with 3 Comments

A blog posting at Clinuvel interviews a family struggling with the severe disease Erythropoietic Protoporphyria. Parents Wendy and Ralph talk about the distress and anguish at seeing their young children suffer the pain of EPP.

Also known as absolution light intolerance, Erythropoietic Protoporphyria (EPP) is caused by a build up of protoporphyrin in the skin. Exposure to the sun causes these molecules to be phototoxic.

Clinuvel is targeting Afamelanotide as a treatment for a handful of skin diseases including EPP. Afamelanotide is a synthetic hormone that stimulates the production of melanin without the need for exposure to sunlight.

Afamelanotide is the international nonproprietary name for a molecule originally known as melanotan 1. Clinuvel has stated publicly that products sold online as melanotan are not afamelanotide.

Even though there are no studies currently planned to target afamelanotide at rosacea sufferers, it remains interesting to rosacea sufferers, especially those who have severe sun triggers.

See the video below and visit the full blog post; The fear of what lay ahead

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About the Author: David Pascoe started the Rosacea Support Group in October 1998. .

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3 Reader Comments

  1. I have EPP, as does my younger brother, my mom, and her father. I’ve spent my life avoiding the sun, both by covering myself with clothing (denim and canvas are best), or by staying out of the sunlight (always checking which side of the street on which I’m walking has the most shade), avoided outdoor activities during childhood, etc.

    Over the past two years, I’ve migrated to the paleo diet (also called the primal diet, cave man diet (don’t like that term)). The diet involves avoiding eating foods that became part of our normal diet after the agricultural revolution (i.e., during the neolithic period of human evolution, which is only the last 10k years or so). I no longer eat grains (especially gluten-bearing grains, such as wheat), legumes (beans, including peanuts), or industrial oils (any oil that requires an industrial process to produce, such as soy, corn, sunflower seed, etc.). Instead I eat real, non-processed food, such as meat, seafood, vegetables, fruits, nuts, and some fermented milk (yogurt, cheese, kefir). I also started taking large doses of vitamin D3 because having EPP, I’m sure I was severely deficient. The natural way to get vitamin D is to make it in the skin through sunlight exposure!

    I noticed that during the summer of 2009 I started tolerating sunlight much more than ever before. In fact, I got sunburn one August afternoon which I spent in the sun wearing just a tank-top and shorts! I’ve repeated the long, mid-day sun exposure many times since then and have not observed a single symptom of EPP! I don’t get the tingling feeling in the exposed skin, nor the gradual increase in pain and swelling. I believe I have actually put my disease in remission. This is the easiest treatment to try and I urge everyone with EPP to give it a try. My Mom started the paleo diet in October and has already experienced a lessening of symptoms. Please email me if you want more information about my case or the paleo/primal diet in general.

    Best of luck to all you fellow EPP sufferers.


  2. Reen says:

    Hi Aaron. I have been suffering from EPP since 17. Im now 28. I had to go home early today from a cabin trip to Yosemite National Park. I started breaking out even before we got there. The sun through the windows activated the tingling pain. I am tired of this conditon. So what do you think caused your remission. I would love a break from this. I love the outdoor. I just wish i can get over this someday…. (fingers crossed)

  3. Aaron Blaisdell says:

    Hi Reen,

    I know exactly what you experienced. I’ve had to cancel so many outings because of symptom flare-ups. I did manage to go on a 5-week paleontology dig in the brutal summer sun of Montana, but the only way I pulled it off was to cover myself head to toe with canvas. Even then, I suffered a continual low-grade inflammation, burning, and itching, but it was bearable enough to not give up on my passion of digging for early mammal teeth.

    As I described in my comment above, I’ve cut out most processed foods, just about all grains and legumes which are high in antinutrients such as lectins (no bread, pasta, pizza, beans, etc. unless I make them from paleolithic ingredients), and don’t eat foods cooked or prepared in seed or legume oils (heavy in oxidized omega 6 Polyunsaturated Fatty Acids (PUFAs).

    Instead I eat real food, such as meat & fish (including liver, beef heart, and other offals), vegetables (remember, corn is a grain not a vegetable, and I don’t eat grains), and some fruit and nuts. I do eat dairy, but mostly a little bit of raw milk, raw-milk cheese, kefir, yogurt (full fat), and butter. I love butter, especially from grass-fed cows. In fact just about all the meat and milk products I consume come pastured animals, not factory farmed animals. I cook with coconut oil, ghee (clarified butter used in India), and sometimes butter.

    I also supplement with high-vitamin cod liver oil and butter oil (a la Weston A. Price), vitamin D3 (6k IU in winter). In summer I don’t supplement much D3 because I try to get it all from the sun (I’m quite tan now). Yes, you heard me right! I sit in the mid-day sun for 30-40 minutes, sometimes longer, to get a nice tan and acquire vitamin D3 and other important nutrients from the sun.

    I think the key is to reduce foods that promote inflammation and consume foods that reduce inflammation. Grains, legumes, and for some people dairy, and even nightshades (tomatoes, potatoes, eggplant, peppers) all promote leaky gut (especially the gluten in wheat), promote inflammation, increase risk of heart disease and other cardiovascular diseases, stroke, cancer, autoimmune disorders, etc.

    Foods that reduce inflammation are fish (and fish oil), grass-fed beef, eggs from pastured chickens, vegetables, and saturated fat. I’ve heard a lot of people who increase the saturated fat in their diet, especially from coconut oil, coconut milk, and other coconut products that their skin feels better, smoother, and increases their tolerance of the sun. Even normal, non-sun intolerant people have reported this.

    Give this a try! Email me at if you want to discuss this more.

    Also see this blog post:


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