Help us to help more people
  2. Porphyria
  3. Advice
Много обезболивающих
by Julianna
Family support.
by Nancy
Cuidar mi alimentación
by Ezequiel
Medications,especially controlled ones(opioids etc) have allowed some dignity and quality of life.
by Trusted(TED)
Mi familia
by Don Cu
Very often in helps not to stay at home in bed, but go out to meet friends to avoid concentrating on my terrible feeling and pain.
by Daria
AVOID ALCOHOL
by Samm
diet and shade has reaaly become my best friends....sunglasses (photo sensitivity) and long sleeves
by lorri stewart
Having Mirena inserted
by Rhonda Ellis
Heating packs
by becky
Changing my diet
by Krystyna Thomas
One day at a time
by Esmeralda
Meeting and speaking to others with the same condition and helping children newly diagnosed.
by Georgina Davies
Pain meds
by Diana Greer
Avoiding triggers.
by Tracy Fannin
Living and working in a small town on the shady side of the street!
by Sandra Jackson
I have a letter from my specialist that tells doctors in A&E (ER) what's happening and how to treat me, this prevents unnecessary tests or doctors doubting what i tell them
by Tony McLaughlin
Less stress
by Bonnie Paul
Go to ER and get D10 before the pain develops.
by Annika
Organic Manuka honey before bed, during attacks or just when feeling symptomatic.
by Chelle
want to go Gym
by Abdul Waheed Butt
Internet sites and friends
by Barbara
Advances in clinical trials - an implant might lead to a normal life !...
by Lee webb
Eating healthy
by Louise
Support system
by Molly Ingerson
Finally getting a diagnosis
by Emily
Wear a Medic Alert bracelet
by Anne
hope of new drogs
by Ingela
Sleep. Lots of it.
by Anon
load on carbs day before stress and complex sugars and gatorade when in trouble
by Bob bishop moms madien name wallace
getting to know others with Porphyria
by Lica
no stress
by Nathalie
El grupo Conoces algo sobre la Porfiria??? En Facebook
by eva maria
Hacer actividades que me suban el ánimo me ayuda a disminuir el dolor. Por ejemplo nadar
by Eliana Carolina
Sleep! Make sure to get enough sleep
by Elliot
Remain positive
by JPolaske
Taking time for myself every week to reduce stress (sheet mask spa day oh yessss)
by Dayle
Stay out of the sun.
by Angelrose
Watch stress
by Leigh Ann
It took me 14 months to leave the hospital, but determination is key to recovery.
by Rebekah G
An excellent hematologist that is well educated in porphyria
by NuggetMidge84
Small daily doses of zinc sulfate, turmeric, D3, B complex
by Ann Marie
It could have been worse;)
by Baptiste
Staying positive
by Kristy Patterson
Following good high carb diet is essential in acute porphyria. Be mindful of fragile skin which bruises and tears easily.
by Carollynn
Очень мягкая кровать
by Julianna
One doctor who made observation.
by Nancy
Tener certezas de lo que me ocurre
by Ezequiel
Learning and pursuing knowledge about this disease is increasing awareness for me and others is giving me purpose!
by Trusted(TED)
Asociación Mexicana para la Porfiria
by Don Cu