1. EPP Book Project Background and Description
The author and interviewer has EPP and is creating a book she wished she could find while researching her own symptoms.
The book content will include basic information about EPP (Erythropoetic ProtoPorphyria), but the bulk of it will be anecdotal stories of the lives of several (6-10) people who have been diagnosed with EPP. It will also include charts of raw, anonymous data from 12-50 people such as the age of diagnosis, severity of symptoms, etc.
The author will conduct interviews with anyone willing to tell their story. The approximate steps will be:
1) Person with EPP expresses interest in being interviewed
2) Person with EPP is given a survey with basic medical information questions and is asked for available dates to speak via phone/skype.
3) Upon completion of the survey and interview, the data from the survey is retained in a database and the interview transcribed.
Survey (see below)
Verbal Interview (see questions below)
Book – final product
4. People/Partners involved
Disa McCarthy – author/interviewee
Glass Beaker Publishing, LLC – Publishing company
American Porphyria Foundation – Seeking partnership, specifically help finding people with EPP and supporting the book as a resource upon completion.
People with EPP – to complete the survey, to interview, and ultimately as a target market.
The survey can be sent out the first week of January, and interviews will be scheduled for January, February and March of next year. The book will be written by June of 2017, and edited/finalized by August 2017.
Approval and Assistance to Proceed
I am seeking approval, authority (if necessary) and assistance from the American Porphyria Foundation, and welcome any questions, concerns or comments you may have.
This survey will be given to anyone and everyone who has or thinks they may have EPP. The format will be a Google Form for ease of use and collection. Each question will have the answers available in a multiple-choice format.
1) Age at symptom onset?
2) Did you have difficulty getting a diagnosis?
3) How many tests did you undergo to achieve diagnosis?
4) How many doctors did you visit for your EPP symptoms prior to diagnosis?
5) Were you able to attain a diagnosis?
6) Age at diagnosis?
7) Age now:
8) Ethnic background:
9) Does anyone else in your family have EPP that you know about?
10) Does anyone else in your family have porphyria that you know about?
11) Symptoms possessed upon sun exposure: (tingling on chin) (pain) (itching) (blisters) (swelling) (fatigue) (panic)
12) If you have swelling, please rate the level of swelling from 1 – 5, where 1 is mild, 2 is noticeable, and 5 is skin-splitting.
13) If you have blistering, please rate the level of blistering from 1 – 5, where 1 is a slight rash to 5, 2nd degree burn level.
14) If you have pain upon exposure, please rate the level of pain from 1 – 10, where 1 is uncomfortable, 6 is unable to concentrate well through the pain and 10 is unbearable.
15) Where does pain occur upon exposure – please list 1 for worst, 2 for 2nd worst, 3 for 3rd worst, etc: (hands) (arms) (face) (chin) (shoulders) (neck) (chest) (trunk) (legs) (ankles) (feet)
16) Has your social life suffered as a result of EPP?
17) If you are over 18, do you work during the day?
18) Do you have trouble managing appointments, work, or student life on a normal schedule?
19) Do you wear special clothing prior to leaving the home?
20) Do you use any of the following on a daily basis: (sunscreen) (hat) (scarf) (face covering) (long sleeves) (gloves)
21) Do you ever purposely not use a hat, scarf or covering when out among people simply to “fit in”?
22) If you do neglect proper covering, how long is your recovery period until you feel back to normal?
23) Has your life improved since diagnosis?
24) Have you been more socially active since diagnosis?
25) Do you feel that knowing the name of what you are suffering from has benefitted you in any way?
The following are questions to be asked the interviewees verbally. Questions may be viewed prior to interview. The interviewer may ask follow-up questions to these if she feels that an interviewee could speak more about a certain area. All interviews will be recorded to ensure accuracy. Some questions may overlap the survey.
1) Tell me about your diagnosis – how old were you and what was the process like?
2) What has been different before diagnosis and after diagnosis?
3) Were you ever isolated as a result of EPP?
4) Do you feel those situations could have been handled differently, and if so, how?
5) Do you suspect anyone else in your family has EPP?
6) How do you handle family functions or events with large groups of people in indoor/outdoor settings?
7) What has been the hardest part about having EPP?
8) In what ways has having EPP made you a better person?
9) Currently, how severe are your symptoms?
10) What is an “average attack” like?
11) What was the worst bout of EPP like?
12) What works for you for prevention?
13) What works for you in the case of accidental exposure?
14) If you feel pain start, what actions do you take?
15) Do you feel you need to hide your symptoms at work or with friends?
16) Do you have people you can speak openly to about your symptoms?
17) What advice would you have for an adult that suspects they may have EPP?
18) What advice would you have for a parent who recently learned their small child has EPP?
Please feel free to reach out anytime with questions or concerns.
Glass Beaker Publishing