Tags » Porphyria

Potential Interview

I have received the chance to interview a sufferer of EPP and to learn of how their condition has been diagnosed, managed and the lifestyle they must lead. 49 more words

Potential Areas for Research

In general, I believe key areas for research include:

  • Underlying causes
  • Symptoms
  • Diagnosis
  • Lab testing
  • Genetic testing
  • Management
  • Drug treatment
  • Effect on sufferers
  • New research…
  • 37 more words

Porphyria Awareness Survey

As Porphyria is an often overlooked condition, I have decided that undertaking a survey to find out people’s awareness of Porphyria would be a worthwhile exercise. 163 more words

Selecting a Direction

After some basic research, I have found that the Porphyrias are a group of 8 conditions and examining them all is impractical for my project. This means that I must choose a single type of Porphyria to study in depth. 42 more words

Replies to Initial Emails

The Events Coordinator and International Liaison for the BPA responded to my email on the 16th of June. The response was very positive and supplied me with a lot of written information and useful documents which are given to Porphyria sufferers. 351 more words

Opening a Dialogue with Professional Experts and Organisations

The previous weekend (15th June), before this blog was started, I sent emails to several people and organisations in the hope of obtaining primary research, in the forms of interviews with sufferers of Porphyria or information from experts in the field. 320 more words

First Thoughts

I’ve started doing the EPQ because I wanted to learn some new skills which I can use later at university. I’m hoping to study medicine after 6th form and decided that this project would be a useful first step. 208 more words