Erythropoietic Protoporphyria (EPP)
Below is the story of Elfi from the German Porphyria Support Group. She tells us that she cannot speak much english but would like to have someone who spoke German to help translate their communications.
If any of our members can do this, please contact the APF.
To Porphyria Friends:
Porphyria is very complicated and nobody knows really how to treat it. Every patient reacts differently.
We don't know what really provokes Porphyria. The triggers are not all known.
We know some medication, hormones, infections and stress is responsible and assume also other triggers, but there is a lot we don't know.
In 2006 I have been at an expert meeting, which was carried out in German language. There were present :
Herr Prof. Dr. med. Petro Petrides, Munich, Germany
Herr Prof. Dr. med. Jean-Charles Deybach, Paris, France
Frau Prof. Dr. med. Minder, Zürich, Switzerland
Herr Prof. Dr. Jorge Frank, Maastricht, Netherlands
and a lot of others doctors and labs.
I was asked to found a support group, because we know so less about Porphyria. These support group I founded together with mister Petrides in Munich.
You can find a lot about Prof. Petrides in English in the internet. He is known all over the world. He is hematologist and oncologist and is dealing since 1998 with Porphyria. He used to work in the Charitee hospital in Berlin.
For many years there has been nothing new, no new medicine and nobody who is doing research and development to find a new better medicine. There are always only lab reports and statistics.
In Sweden they did some research for a little while, but it didn't work. There is just no really effectful ideal medication.
We are too less people, therefore we have to join together all over the world, then we have a lobby and a chance, that we are respected in the Pharma research and development.
I often have contact with Prof. Petrides and there will be another meeting in Frankfurt in November 2007 with many doctors in German. But there is nothing new to report. Always the same teachings. The doctors are despairing when they have a Porphyrie patient.
At the beginning Porphyrie is not detected for a long time and the patient is treated in many wrong ways and if he survives, the doctors don't know, what to do. And the diseases appears very variable.
All the best to you and everybody in your group, to all Porphyria patients and affected in your country and all medicines, who care about our disease.
Elfi from Germany