Ann Marie's interview
Error
How did all start?
Hereditary hemochromatosis was found at age 30 as well as Porphyria cutaneous Tarda. 98% liver saturation of iron at time. Currently turning 50 in May 2019 so living for past 20years/managing! Follow drug allergies since reactive to unsafe drug list items!
Do you already have a diagnosis? How long did it take you to get it?
Went to 16 doctors in a year when first moving to Seattle
For what medical specialties have you been treated? What has been the most useful specialty for your?
Hematologists have been most helpful with phlebotomists. Keep iron down/watch drug list/diet/sun; maintain Porphyria attacks.
What has been the most useful thing for you so far?
Safe n unsafe drug list Finding hematologists who understand
What have been your biggest difficulties?
Finding hematologists who understand (found on finally...I think) Understanding that HH & PCT can have drug reactions too!!!!!
How has your social and family environment reacted? Have your social or family relationships changed?
Husband n children are GREAT; parents n siblings are ignorant
What things have you stopped doing?
Vacations in the sun Eating out at new restaurant without calling first for trigger food items (is alcohol)
What do you think about the future?
It’s all in what u make of it! I police myself, food, weather and plan accordingly
So far, which years have been the best years in your life? What have you done during them?
Raising my children! Appropriate clothing, umbrellas if necessary, safe foods!
What would you like to do if you didn’t have your condition?
I always find a way to accommodate. It would bd great to enjoy a nice Malbec wine with a great dinner!!!
If you had to describe your life in a sentence, what would it be?
My own journey; choices and decisions that make me happy and content!
Finally, what advice would you give to a person in a similar situation?
Listen to your mind & body! It will tell you what doctors cannot. Research the natural avenues which lead to comfort.
