Welcome to EGPA.info, a site dedicated to those diagnosed with this rare and challenging autoimmune condition. EGPA occurs in 2-3 new cases per year per million people, which means you are selected with almost impossible odds to belong to this unique group! OK, not what you had in mind but we hope that somewhere in these pages you can find a way to make sense of it all.
Plato says that the unexamined life is not worth living. But what if the examined life turns out to be a clunker as well?Kurt Vonnegut
EGPA can arrive and present itself in many ways but there is generally a point at which the diagnosis is confirmed, which we address in the 'Crash' section. The 'Recover' and 'Live' sections are there to help with how to get your life back into some kind of new normality. You are in charge!
We ask questions like 'Is this really happening?', 'Why ME?' and talk through what might happen next.
Recovery is obviously hugely important and there must be close collaboration between you, your medical team and those around you. We talk through the issues and compare it to climbing a mountain. Mountain air is good, right?
There are many challenges and we could easily be dragged down into the negatives but there is absolutely no reason why life after EGPA should be worse than before. So we look through the issues and hope that you will give feedback on what has kept you motivated to defeat this barefaced attempt to steal your life!
There is still much to do in this section, so please keep coming back. You will find a mixture of easy reading and highly technical including a glossary of medical terms that often come up in the context of EGPA.
If you are a friend or family of a newly diagnosed sufferer then stop off here.Friends and family
We hope these pages will help as you work your way through the many issues and questions. Moving along the menu above, from left to right, will help order things for you, particularly if you have been recently diagnosed.
You are not going to be left alone with these medical tongue twisters. There are new drugs, better treatments and many who have been there before you and are ready to help.
Once you have got to grips with your condition and you feel ready to learn more, have a look at our resources section to find out what is happening in research, or just to read some of the interesting commentary, blogs, FAQs etc. Tip, dont get into medical papers too quickly, the language is difficult and older papers can reflect an outdated prognosis.
EGPA stands for "Eosinophilic Granulomatosis with Polyangiitis!"
Churg-Strauss Syndrome (CSS) is the old name, still used by many, but this is slowly changing, particularly in medical documentation.
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Apr 26th : Updates have been made to the resources section. there is an FAQ on tattoos and numerous additions to the glossary and education pages.Visit the resources page.
Apr 15th : We reported on Avery's Walk-a-thon last month - he is still going and you are still giving. Don't stop there! He wants to achieve so much and is making an unbelieveable effort. Read more and please donate. Avery has also agreed to be featured on the Can DO page where his story can be seen. Visit the Can DO page.
Apr 6th : Estelle tells her story. We hope this will encourage you to tell your story too! Visit the Can DO page.
Apr 1st : There is a brand new page in EGPA.info which looks at how fellow sufferers find ways to challenge themselves and give life a new direction. Its entitled 'Can DO' and can be found under the 'Live' menu. Suzanne is the first contibutor. We hope this will inspire you to tell us about your story. Visit the Can DO page.
Mar 25th : Jessica, an EGPA sufferer, has just launched a Facebook interest group to help victims of chronic-illness & abuse. She will offer tips and coping strategies. Visit Jessicas' page.
Mar 15th : Making a difference : Avery is only 18 years old but has EGPA. His experience has made him determined to help others and raise as much he can, so he is doing a Walk-a-thon. Well done Avery. Read more and please donate.
Mar 9th : Toni Street NZ Celeb: 'Last year was the hardest I've ever had' Womans weekly article.