I thank you lots, Porphyria.
I thank you lots, Porphyria.

4 Ever Porphyria Strong
My dad is my hero and he lives with one of the rarest diseases know as CEP where he is allergic to the sun and gets blisters if he goes into the sun and gets sores and then they turn his skin into scars. He has been through so many different surgeries and lots of pain but always puts others first. The last surgery has given him a new fresh face with a new nose and skin on his face that’s not scared all up. I wanted to draw a picture of how my dad has always been forever strong living with porphyria not just with his struggles but always fighting for others with this disease. From the past to the present he always shows up for those living or caring for porphyria patients. That is why my dad will be “4Ever Porphyria Strong”

Overcoming pain to bloom again
Overcoming the pain and enjoying the magic in the little things again

Porphyria: The Inner Battle
This artwork represents what it feels like to go through a Porphyria crisis. Every detail was created to transform symptoms, pain, and emotions into something visible.



The fire surrounding the figure represents the extremely intense heat felt during a crisis, as if the skin were burning from both the inside and the outside.



The blurred face symbolizes the hallucinations and distortion of reality that can happen during crises. It is like losing the ability to fully recognize what is real.



The melting body holds different meanings. It represents the extreme abdominal pain caused by porphyria during a crisis, a pain so intense that it often feels impossible to describe.



It also represents the progressive paralysis that can happen during these moments, as if you were slowly losing control of your own body from the bottom upward.



The puddle beneath the figure symbolizes the change in urine color during crises, which can vary between reddish, purple, or darker tones.

The exposed veins and arteries represent the origin of porphyria: the heme present in the blood, showing that the disease exists silently within the body itself.



The violet flower growing from the chest represents hope, love, and resistance in the middle of pain. Purple is the symbol of porphyria, but it also represents strength even during the most difficult moments.



The dark background symbolizes the isolation of facing a crisis that happens inside of you, often without others being able to truly see or fully understand it.



This painting represents not only the disease itself, but also the physical and emotional experience of surviving a porphyria crisis.



My name is Ayssa, I am sixteen years old, and I lived through this when my mother suffered during a severe crisis. Today, knowing that I also carry this condition within me, I live with the hope of never having to face this inner battle that feels impossible to express through words.

Atrapada!
"Atrapada!" is an inner looking piece that describes my whole life since I was 7, when I was diagnosed with porphyria. Katrina was the first person I have met with the same disease as me, and her story is a heartwarming piece that tells not only our shared struggles, but says out loud that, we are not alone.

A Body That Isn't Always Mine
This piece reflects what it means to live in a body that can change without warning and the process of learning that even in those moments, it does not define who I am.

Inherited Radiance
My vision was for the stained glass to feel less like “illness” and more like a story of strength—fragile yet radiant, scientific yet spiritual, with light passing through every struggle.

At the center, a round glowing deep crimson jewel surrounded by amber sun representing blood, heme, and the body’s life force— beautiful but delicate. Around it, flowing violet, and deep purple symbolize mystery, sensitivity, and the often invisible nature of porphyria.

The prisms reflect balance between light sensitivity and darkness—especially meaningful for forms of porphyria affected by sunlight.

I’m a 50 year old who as diagnosed with AIP at age 23; with all the struggles that entails.

This piece is in memory of my mother; who preceded me with this inherited disease and was diagnosed in 1964 at a time when porphyria was really understood or treated. Despite struggles she lived with Radiance and strength.

Professor Porphy
Professor Porphy can help people better understand a scary disease in an easy to understand way. He’s cute and cuddly but also smart.

When the World Turns
The work reflects the duality of living with acute intermittent porphyria: the visible world of everyday life and the hidden internal reality experienced during attacks, showing symptoms of AIP and the uncertainty of the misdiagnosis.



Disclaimer: This work was created as a digital drawing and was not generated using AI.

The change
My family's journey of porphyria.

It has not erased my name
I wrote this poem to give voice to the invisible reality of living with porphyria... the pain, exhaustion, fear, resilience, and the quiet strength it can take just to move through everyday life while still smiling at the world.

I wanted to capture what it feels like to live in a body that can sometimes feel unpredictable and consuming, while still holding onto identity, hope, and beauty in unexpected places. The wildflowers in the poem symbolize those small moments of grace and light that still bloom alongside chronic illness.

More than anything, this piece is about resilience, survival, and refusing to let porphyria erase who I am.

You carried me
My Reason, without you, I would not be me

Mirage
My depiction of life since being diagnosed with Acute Intermittent Porphyria as a young mother in the United States.

Grieving the life I might never live
I mourn the life I have always dreamed of, the experiences that are denied to me. It scares me that time is slipping through my fingers. I’m angry and devastated that I’ll never be a mother. I feel alone in my powerlessness, because everyone tells me I am strong. But I don’t want to have to be strong anymore. I am full of pain, but I’m also grateful. I am grateful to have my partner and my family by my side. I am grateful for everything I was able to experience before I got sick and I have hope that I will feel better at some point, that I will be able to travel again and maybe even study.

AIP; Mermaid and Merman; Love Saves
This art piece represents me in the world portrayed as a mermaid in a black and white world where t highlight the rigid and judgmental world symbolizes my AIP struggles; my partner is my caregiver who is represented as a merman and he helps me through life with struggles of AIP. There are hidden details in the painting that further represent the power of the universe that helps me find strength: chakras on our bodies that show our strength and connection to the universe and the Seed of Life representing the seven days of creation, since it acts as a blueprint for the universe and a building block for the Flower of Life, symbolizing creation, fertility, and protection, it’s a symbol of my strong connection to the universe and the very difficult decision I made 20 years ago due to AIP not to have children so that they would not have to struggle with the pain and struggles of AIP as I have been since my 20’s. I am represented as a mermaid because I feel that with my AIP I don’t belong in this world of humans that don’t understand this illness and many consider it a mythical desease- just like mermaid being considered as a mythical creature that doesn’t exist. Prior to getting my AIP diagnose, I was told by many medical professionals that nothing is wrong with me since all my bloodwork is good and all the symptoms that I’m experiencing and the horrible pain is a figment of my imagination and it’s not reall. I was kicked out of Emergency Rooms in many hospitals and told that I’m imagining all the pain and symptoms until one Doctor saved me and did a DNA test that proved AIP, and that it’s real and my partner keeps saving me as he sees and feels my AIP struggles and he is therefore my Strongest Support, my powerful Merman that gives me strength to live with AIP in a world that doesn’t understand this condition and I always have to continue to prove that it’s real. The surrounding waives in the painting represent my ongoing AIP attacks, some worse than others but always there, coming and going. At the left top of the painting the words אהבה mean Love and it symbolizes that love and support can overcome everything in this world.

Résilience
As the sign indicates, the wall of life is white, and we have the choice to color it as much as we wish. At times, life goes through very harsh passages that we do not choose. In my painting, the grater appears only on one part of the wall: we must always keep in mind that this too shall pass.

The figures in my painting each tell, in their own way, their manner of resisting and fighting. Yet they all share one thing in common: resilience.

The first figure is Super Woman: the one who tries with all her strength to evade and escape the grater, who refuses to be defeated despite the string tied to her foot, trying to pull her back to the beginning. In spite of everything, she remains close to the end, close to the finish line. This character is a tribute to all patients living with porphyria or rare diseases, often faced with years of medical wandering, and who nonetheless remain resilient.

The woman holding her baby in her arms is a tribute to all mothers living with porphyria, who refuse to be overcome by illness and who, despite every hardship, keep moving forward for their children.

There is also the figure in sportswear, who has reached the finish line stronger than ever, more resilient than ever.

The dog is a thought for our companion animals, who suffer with us and feel our pain. They endure our absences, our exhaustion, our moments when we no longer have the strength to play with them or take them for walks as usual, yet they remain loyal and present.

Without forgetting the little black cat, which I deliberately painted as a symbol of the small misfortunes that sometimes mark life’s journey.

Finally, the figure being pulled into the black hole represents resignation: that moment when one feels there is no strength left. But even in the face of this, it is always possible to rise again, step by step, and find the light once more.

After reflecting deeply on resilience, I would like to share one message: the first step toward resilience is rising early—whether in spirit or in body, whenever possible.

To all those who struggle in the shadows: your fight has value, your fatigue is real, and your courage deserves to be recognized. Your resilience deserves to be applauded.

May the Dragon Sleep
We imagine acute intermittent porphyria as a dragon that has been awakened and needs to go back to sleep.

"Panhematin and Possibilities"
Navigating life with Porphyria is challenging and unpredictable. Panhematin treatment during an acute attack can offer recovery from symptoms, allowing patients to pursue more of life's possibilities.



For this watercolor artwork, I used paint that is similar to the color of Panhematin. The painting depicts people engaged in various activities such as reading, walking their dog, fishing and kayaking. All of these actions were potentially possible because Panhematin (shown flowing through a maze of veins and neurons) supported and protected their bodies during an acute Porphyria attack.



I was inspired to create this painting in honor of my loved one who lives with Acute Intermittent Porphyria. They are regularly hospitalized while in a Porphyria attack and Panhematin has been vital part of their lifesaving treatment protocol. It slows the AIP attack cycle, helps to reduce symptoms and pain, and prevents nerve damage in the body.

Free from darkness
My art piece showcases a lifelong battle between the C.E.P patient(my brother) and the the dragon (the sun)and in the end he Conquers the dragon and moves forward out of the darkness.

The Way of the Unseen Warrior
The Way of the Unseen Warrior” is a kabuto inspired crocheted hat with a detachable oni mask. It is meant to symbolize the resilience and discipline it takes to face porphyria each day. Samurai were known as some of the fiercest warriors in history, and that same inner fierceness is required to fight this often invisible illness. The armor reflects the emotional strength needed for this daily battle, while also giving a nod to the protective gear many in the porphyria community rely on. This functional piece honors the unseen warrior spirit carried by everyone living with this rare disorder.

My own blood poisoned me
This is a story booklet written by the overwhelmed inner child of a girl with porphyria. It depicts herself, the symptomatic reality, and the panic she felt during a porphyria attack.



It also reflects the desperation that all invisible illnesses face in advocating for their pain. Specifically, in a world where, despite your whole internal world suffering, your pain is still not seen or believed. This means your pain is not supported and never ends.



She is trying to scream for help as loud and clear as she can, but you can’t hear her, as it is still just a visual image. Every way she tries comes out looking the same. She is screaming for help and yet is silenced.

EPP "Magic Girl Transformation"
Gearing up to go outside every single time can make me feel like such an alien. It's tedious, constraining, and time consuming. So to envision putting on my gear like it's an anime style transformation puts the experience in a whole new light. It's so empowering to feel like it's a magic transformation and not a requirement of my existence. And that is freedom.



I want to give a huge thanks to my sibling for helping me make this! I wrote this comic a while ago and made the outline and my sibling was very happy to clean it up and add color!!

The King's Anathema
The King's Anathema Responding to the prompt surrounding invisible realities, misconceptions, and misunderstood experiences related to Porphyria, I dove deeply into my experiences and fused them with the themes of cosmic horror. The genre has long resonated with me, and its atmosphere of alienation, dread, and incomprehensible transformation felt strikingly appropriate for expressing the lived experience of Porphyria. The King in Yellow served as a major inspiration and an equally fitting allegorical framework. This poem took considerable time to write and refine, and in the process, as it became something of a personal excavation as well. I hope you find some understanding in this piece of cosmic horror poetry, and I hope your journey with Porphyria is met as gently and kindly as it can be. Without further ado, I proudly present The King's Anathema.

One apple. One day.
Pun played on the popular saying: " An apple a day, keeps the doctor away"



The biggest miracle for a Variegate Porphyria community in South Africa will be a cure and treatment plan in place to finally stop them from getting sick, and free from the uninformed doctors that we are forced to see,

aka: "keep doctors away"



Symptomatic VP patients are desperately in need for that "a magic apple".



This oil on canvas was painted with this image and quote in mind.



The dark and moody feel of the painting represents how many of us live - behind curtains, and in the dark - as many are severely sensitive to sunlight.



The closeup perspective draws the viewer in to experience the frustration of not seeing the big picture, being forced to stay around over-familuar surroundings - as many of us as are forced to live in close courters and in confinement and seldom gets out of their familiar surroundings, as they can be triggered by so many things in the outside world..... when you spend too much time with the same things, you start to see everything up close and very personal.



A green apple was chosen to give the feel of fresh and new. And that is exactly what Variegate Porphyria need: a fresh and new perspective and approach to understanding this disease.



The apple is bathed in tears, representing all the spilled tears from patients, loved ones and proffessionals that knows the pain that this disease cause. Their brave stories will not go to waste, and it will give birth to a treatment- and cure plan in future. ONE DAY.

My life experience, reflected in your life experience.
Me (in the reflection), in my full sun gear, photographing my sister, who also has EPP, in her full sun gear.

Sand Beach, Acadia National Park, Maine, USA

(July 2025)



Growing up with a sister forges an unbreakable bond. Growing up with a sister, both living with the invisible pain and fear of EPP, undiagnosed until the ages of 14 and 16, transcends connection. Even when no one else believed us, we always had each other. My life experience, reflected in her life experience. My soul, reflected in her soul.

Shaded Serenity
A magical day upon the California redwoods

Deuteronomy
Inspiration was taken from The Holy Bible, Deuteronomy Ch 31:6. “Be strong and steadfast; have no fear or dread of them, for it is the LORD, your God, who marches with you; he will never fail you or forsake you.”

EXPERIENCE OF HELL IN TODAYS WORLD- PORPHYRIA
It expresses each emotion felt in a porphyria attack which I’ve portrayed in my paintings.

It also consists of prompt answered line wise just the middle one is the tittle of my ART. Besides that all the prompts are answered line wise.

Bring your own shade
Embrace the challenge of EPP with your own vibe ✌🏻 let the trains roll by - the path ahead is still beautiful.

What the world sees
This is a piece about what the world sees vs what the world doesn’t see when being a parent to a child with porphyria

Free
Painting on canvas. Spring '25. On the right side my hand protecting my daughter from the harmfull sunlight. Left, the light is free to go, so is she. At that time she was expiering the first liberty being on medication, Dersimelagon.

In a Porphyria Flare
In a Porphyria Flare I've been in and out of a flare these past few months. This poem is about a pretty rough day.

SELF
SELF is a three-part visual poetry piece exploring the emotional and psychological impact of living with porphyria and other chronic illnesses. This section focuses on endurance and survival, reflecting my experience of trying to hold onto identity while navigating invisible illness, isolation, and the uncertainty of life. The piece explores resilience through emotional struggle and the realisation that, despite everything,The Only Way Is Through.

The Elephant in the Room
A porphyria diagnosis often requires a step back.