Skip to main content

Quotes of Porphyria Read & Share

Please read and share
American Porphyria Foundation
Published by Rob Saupe'20 hrs
The old adage, No Pain, No Gain, may work well in certain instances, but for porphyria, No Pain, No Gain is a terrible maxim. Most patients agree that porphyrias do not fit within the mainstream of painful conditions, like broken bones, labor pains, muscle spasms, etc. Porphyria pain is so severe that it is difficult to explain, but the people below have used their own extraordinary descriptions. After you read their quotes, you will understand why porphyria has gained a reputation as one of the most painful diseases.

Victor Mejias (EPP) It itches and burns so bad it makes me climb the walls.
Emily Melone (AIP) It is like “charlie horses” in my intestines.
Mike Boone (AIP) I want to unzip my skin and step out. My ribs feel like they are being fileted.
Karen Eubanks (AIP) I am being kicked with a steel toed boot.
Kim Stala (EPP) My hands feet and face are in boiling water for days while a knife is cutting and twisting my in-sides.
Monique Jacobs (HCP) My skin is akin to jellyfish stings while my belly burns like a washing machine full of lava.
Steve Stevens (AIP) My rib cage feels like the lava inside a volcano with lightning bolts going off.
Tara Cantley (AIP) My arm feels like someone cut off the circulation with a tie.
Lisa McFarland (EPP) It's like sticking your hands in a vat of hot frying oil with no relief in sight.
Stacy Hermann (AIP) I feel confused, angry, and full of deep despair. I cry at nothing at all.
Rachel Shinn Olstad (HCP) My daughter says it is like a knife stabbing her thigh over and over.
Debbie Rohn (AIP) My daughter says it’s like getting stung by thousands of bees and peroxide in her veins.
Deb Miller Gilbert (VP) My nerve endings are firing all at once and I do not get a break from it. My nerves are so overstimulated that a loving hug from my son is excruciating.
Tara Cantley (AIP) Someone is squeezing my arms and legs until they go numb and nerves feel as if they're burning.
Theresa Flagg Jurls (PCT) An inflated object with steel spikes caught behind my right ribcage.
Rachel Johnson Keith (AIP) Demons are chewing their way out of my gut and standing in a pile of fire ants.
Nicole Marie DiRoma (AIP) Severe burning torch in my stomach, being pregnant for your whole life and muscle pain like a 500lb person sitting on you and won’t get off.
Rachel Ballew Campbell (AIP) It feels like someone is slicing your insides with a straight razor, while pouring hot lava through them. There really is no way to explain it.
Beverly Tuberville (AIP) Fire ants are all over.
Jennifer Taylor Nay (AIP) It feels like I am digesting glass shards.
Gregary Scott Allen Edwards (AIP) It’s like being run over by a steam roller, shot by tasers repeatedly, and hav-ing all my life force batteries drained instantly.
Terri Witter (AIP) I have a tummy full of broken glass.
Mary Schloetter (AIP) My bones feel like rolling in glass shards and acid moving through my veins. Episodes are called 'attacks,' I agree as I'm standing alone on a battlefield being hit with guns, cannons and tasers.
Christine R. Baer (AIP) I have a knife through the abdomen, and my insides have jitters and dancing and moving.
Lisa Coleman-Vinson (AIP) It’s like digesting huge, hot rocks with bone crushing pain.
Theresa Flagg Jurls (PCT) Steel spikes poking into my abdomen and ribcage, steel clamp gripped to pelvis.
Beth Nye (AIP) A 600lb person is sitting on my stomach and twisting it like a wet towel to remove all the water.
Nicki Theisen Maus (AIP) My insides feel like they're on fire!
Rogers Reyna (AIP) It’s like aliens use my back as a trampoline while chewing their way through my gut. The nerve pain burn is fire ants having a festival in my arms and legs!
Patty Harris (AIP) Firing swords of hell with demons eating their way through your stomach back, legs, arms, and head. Let’s face it, porphyria is burning hell.
Joe Mrsny (PCT) I look like I have leprosy because of the blisters breaking open. The itching is unbearable and causes scars and it usually comes at night so I am sleep deprived. The sun hurts. My finger nails fall off so I am unable to button my clothes. I just want to lay down and stay out of sight.
Whitney McCabe Stevens (HCP) Reality is, I can't accurately describe the pain of an attack because it is the most horrendous and overwhelming pain I have ever felt! On the pain scale of 1-10, it's 10,000. In my opinion, words simply can't accurately describe what we endure.
**These quotes can be found in the March 2016 Newsletter on the Apf website.…/Newsletter%20March%202…


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…