Skip to main content

Medical Moment: Publications by porphyria experts


Medical Moment: Publications by porphyria experts

Over the years, the experts of the Porphyrias Consortium ( https://www.rarediseasesnetwork.org/cms/porphyrias/have developed an extensive list of publications. These articles have served to educate both patients and healthcare professionals. This lengthy list of publications includes the implementation of research studies, clinical trials, diagnosis, management, current and emerging therapies, etc. of the porphyrias.
Our team of experts continue to work on your behalf to provide you with the most up-to-date information as research continues.  Listed below are a few of the go-to publications. 

We invite you to click on the link below to see the full list of publications.
  1. Annals of Internal Medicine - Recommendations for the Diagnosis and Treatment of the Acute Porphyrias
  2. Benefits of Prophylactic Heme Treatment
  3. Diagnostic Delay in Erythropoietic Protoporphyria
  4. Hepatitis C, porphyria cutanea tarda and liver iron: an update


“Remember…. Research is the key to YOUR cure!!”

Comments

Popular posts from this blog

Amazing patient advocacy....and needed media for this issue. Thank you Terri Witter!

Meet Shadow Jumper Mitchell Felts

Meet Shadow Jumper
Mitchell FeltsMitchell Felts, age 12 How old were you when you were diagnosed?
I was 9 Years old. Do you remember your first flare/reaction?
No, I do not recall my first flare & reaction. What did it feel like to you?
It was tingling bad on my skin. What things help you feel better? (cool water, ice, shade, bath, clothes)
It helps me when I use cold rags and ice packs on my skin. How long does it take before you start to feel better?
Sometimes, I start to feel better after the first day, but sometimes it takes 2-3 days or longer to feel better. What kind of clothing/trends do you wear when you go outside or in bad lighting?
I can use long sleeves, hats and umbrellas. What is your most favorite sport to play or watch? Do you play it inside or outside? During the day or at night?
I enjoy playing baseball late in the day and it feels great to play at night. What ways are you able to adapt to do certain activities outside?
I must cover up, its hot outside so I must take breaks to c…

Medical Moment: Patient/Physician Relationship

Medical Moment: Patient/Physician Relationship
We all want a great relationship with our doctors, right? You, as the patient have a responsibility to establish a solid rapport with your physician and other members of the healthcare team. This can have a positive impact on the quality of care and better access to treatment. Yes, there could be a stigma associated with having Porphyria but don’t let it stop you from receiving the proper treatment that you deserve. Communication is KEY! Below you will find some key elements and tips that will not only prepare you for your visit with your doctor, but also build a strong relationship.
Here are a few tips for your doctor’s visit: 1. Plan – Be prepared! Prepare your questions and concerns beforehand. You want to be courteous of your physician’s time with you. 2. Make a list – Make a list of your questions, concerns and any other relating information. 3. Communication is key – Make sure that you understand fully what the doctor is explaining/a…