- Erythromelalgia
- Interviews
Dana's interview
How did all start?
got the flu in 2013 and thought i recovered but things never were the same....
Do you already have a diagnosis? How long did it take you to get it?
looking for doctor to confirm... been 4 years now seeking a diagnosis
For what medical specialties have you been treated? What has been the most useful specialty for your?
fibro, ibs, cfs, b & d vitamin deficiency, shox syndrome
What has been the most useful thing for you so far?
fans, ice, cool water
What have been your biggest difficulties?
going anywhere outside the house since i can't control the temp so I can enjoy myself and girls..
How has your social and family environment reacted? Have your social or family relationships changed?
I don't go out with family on any outings, I stay home to regulate the temp.... my girls are as understanding as they can be at their age, but miss their after school activities they use to do
What things have you stopped doing?
stopped working, going out to shop for anything, family gathering, don't drive much so not in sun, stopped taking girls to activities they enjoy outside
What do you think about the future?
hoping to find a medicine or something that helps to gain back some normality
So far, which years have been the best years in your life? What have you done during them?
none
What would you like to do if you didn’t have your condition?
More with my girls, anything they want to do
If you had to describe your life in a sentence, what would it be?
it is not perfect but as doctors keep telling me 'you're not dying' do it could be worse
Finally, what advice would you give to a person in a similar situation?
do as much research as u can
