- Porphyria
- Interviews
NuggetMidge84's interview
How did all start?
Tremendous stress related to horrific and unexpected family loss.
Do you already have a diagnosis? How long did it take you to get it?
No it took about 2 months to get a confirmed diagnosis
For what medical specialties have you been treated? What has been the most useful specialty for your?
Ive recieved panhematin it zeemed to lower my attack enough to go back to nornal life.
What has been the most useful thing for you so far?
Due to my tachycardia, my smart watch and blood pressure machine has been most helpful. Also having a soecialust and pcp that understand and know whats going on has been so helpful.
What have been your biggest difficulties?
Sterotypical judgement, uneducated medical staff, adjustting to all the changes its made in my life. Getting pain meds is qlso challenging due to opioids being the only drug that can touch the pain i experience.
How has your social and family environment reacted? Have your social or family relationships changed?
They are supposrtive but i often feel u comfortable around ppl bc o have changed some. Its harder to talk to people now and keep my thoights together.
What things have you stopped doing?
Anything that may trigger an attack and assuming that any medical personel should now how to help me.
What do you think about the future?
Its still so new to me and everything is uncertain. We dont know how my particular case will go and its scary to even get a simple cold or have menstraion or ovulation possibly trigger an attack
So far, which years have been the best years in your life? What have you done during them?
Lots of travel time spent with family
What would you like to do if you didn’t have your condition?
Not worry about medications, have an occasional margarita, sleep at night
If you had to describe your life in a sentence, what would it be?
Depends on my mood but for the most part pretty good.
Finally, what advice would you give to a person in a similar situation?
Take it day to day. Find a specialist and pcp that cares about you and your condition. Dont live thinking how bad it may be
