More from this user

"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.
tw_user 2 Weeks
- "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.
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May the Dragon Sleep
We imagine acute intermittent porphyria as a dragon that has been awakened and needs to go back to sleep.
tw_user 3 Weeks
- May the Dragon Sleep
  We imagine acute intermittent porphyria as a dragon that has been awakened and needs to go back to sleep.
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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.
tw_user 3 Weeks
- 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.
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The change
My family's journey of porphyria.
tw_user 3 Weeks
- The change
  My family's journey of porphyria.
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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.
tw_user 5 Weeks
- 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.
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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.
tw_user 6 Weeks
- 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.
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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.
tw_user 2 Weeks
- 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.
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Mirage
My depiction of life since being diagnosed with Acute Intermittent Porphyria as a young mother in the United States.
tw_user 2 Weeks
- Mirage
  My depiction of life since being diagnosed with Acute Intermittent Porphyria as a young mother in the United States.
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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.
tw_user 2 Weeks
- 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.
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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.
tw_user 3 Weeks
- 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.
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I thank you lots, Porphyria.
I thank you lots, Porphyria.
tw_user 2 Weeks
- I thank you lots, Porphyria.
  I thank you lots, Porphyria.
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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.
tw_user 3 Weeks
- 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.
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Shaded Serenity
A magical day upon the California redwoods
tw_user 3 Weeks
- Shaded Serenity
  A magical day upon the California redwoods
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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

tw_user 3 Weeks
- 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
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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.
tw_user 2 Weeks
- 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.
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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.
tw_user 2 Weeks
- 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.
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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.
tw_user 2 Weeks
- 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.
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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.
tw_user 5 Weeks
- 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.
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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.
tw_user 3 Weeks
- 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.
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The Elephant in the Room
A porphyria diagnosis often requires a step back.
tw_user 2 Weeks
- The Elephant in the Room
  A porphyria diagnosis often requires a step back.
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Overcoming pain to bloom again
Overcoming the pain and enjoying the magic in the little things again
tw_user 2 Weeks
- Overcoming pain to bloom again
  Overcoming the pain and enjoying the magic in the little things again
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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.”
tw_user 2 Weeks
- 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.”
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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.

tw_user 6 Weeks
- 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.
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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”
tw_user 2 Weeks
- 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”
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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.
tw_user 3 Weeks
- 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.
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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.
tw_user 2 Weeks
- 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.
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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.
tw_user 6 Weeks
- 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.
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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.
tw_user 3 Weeks
- 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.
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Bring your own shade
Embrace the challenge of EPP with your own vibe ✌🏻 let the trains roll by - the path ahead is still beautiful.
tw_user 3 Weeks
- Bring your own shade
  Embrace the challenge of EPP with your own vibe ✌🏻 let the trains roll by - the path ahead is still beautiful.
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You carried me
My Reason, without you, I would not be me
tw_user 3 Weeks
- You carried me
  My Reason, without you, I would not be me
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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!!
tw_user 2 Weeks
- 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!!
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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.
tw_user 3 Weeks
- 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.
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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.
tw_user 2 Weeks
- 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.
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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.
tw_user 2 Weeks
- 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.
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International Porphyria Art Challenge

This contest ended on 6-1-2026 11:59 PM Eastern Time

International Porphyria Art Challenge

This contest will start on 4-15-2026 12:00 AM Eastern Time

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International Porphyria Art Challenge

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Rules

United Porphyria Association
International Porphyria Art Challenge 2026 Official Rules

Purpose
This contest provides a structured platform for artistic expression connected to experiences surrounding porphyria. The goal is to support meaningful reflection, advocacy, and visibility without requiring disclosure of private medical information.

Themes
Participants must select one of the following conceptual prompts and may interpret them, symbolically, critically, or abstractly.

What porphyria signifies in one’s life, identity, or sense of self
Defining oneself beyond a diagnosis
How porphyria has shaped experiences, relationships, or worldview
Navigating, resisting, or responding to challenges linked to porphyria
Invisible realities, misconceptions, or misunderstandings that deserve recognition
Emotional dimensions such as resilience, grief, hope, uncertainty, or complexity
Imagining a future or world with greater awareness and understanding of porphyria

Permitted Mediums
All forms of creative expression are welcome, including visual, digital, literary, performance, design, and experimental arts of any kind.

A brief caption of one to two paragraphs must accompany each submission, explaining how the work relates to the selected theme. This statement should focus on conceptual intent rather than personal health disclosure.

Explicit Prohibition of AI Use
All submissions must be original human-created work. AI-generated, AI-assisted, or AI-augmented material is strictly prohibited, including partial use of AI tools for visual creation, drafting, rendering, editing, enhancement, or written composition. If AI use is identified, the submission will be immediately disqualified without appeal. The organization reserves the right to request reasonable verification of authorship and holds final authority in such determinations.

AI may be used to translate captions or written work for non-English speakers. The text in its original language should be submitted along with the AI-produced English translation.

Eligibility
Any member of the porphyria community (individuals with porphyria, caregivers, healthcare professionals, researcher and allies) are eligible to participate. Minors under the age of 17 require parental or guardian consent. Anonymous or pseudonym submission will be permitted to protect privacy if desired.

Submission Requirements

One submission per participant.
Work must be original, unpublished, and not previously entered in another contest.
Each submission must include a title, selected theme, and artist statement
Writing must comply with established word limits.
Visual works must meet the organization’s stated file format and resolution standards.
Multimedia works must meet stated technical compatibility requirements.

Important Dates

Submission Deadline: Sunday, May 17, 2026 at 11:59 PM EDT
Voting begins: Monday, May 18, 2026
Voting ends: Monday June 1, 2026 at 11:59 PM EDT
Winners announced: June 5, 2026

Evaluation Method: Public Voting System

There will be no appointed judges. Evaluation will occur through a structured public voting system administered by the United Porphyria Association.

All accepted entries will be displayed in a designated public viewing format.
Voting procedures, eligibility to vote, timeframes, and anti-manipulation safeguards will be defined and published.
The organization reserves the right to nullify irregular or fraudulent voting activity.
Voting results will determine winners, and results are final.

Awards and Recognition
Prizes will be awarded based on number of votes.

1st: $1,000
2nd: $750
3rd: $250

All three will be posted in the UPA Headquarters.

Copyright and Use of Work
Artists retain full copyright. By submitting, participants grant the United Porphyria Association a non-exclusive, royalty-free license to display entries for educational and advocacy purposes with attribution. Extended or commercial use will require explicit additional consent. No private medical or personal data will be collected beyond what is voluntarily provided.

Ethical and Content Standards
Submissions may reflect positive, neutral, or difficult experiences. Inspirational framing is not required. Entries must avoid harmful stereotyping, disrespectful portrayals, or gratuitously graphic content unsuitable for public display. The organization reserves the right to exclude works that violate content standards.

Administrative Provisions
The United Porphyria Association reserves final administrative authority regarding rule interpretation, eligibility determinations, disqualification decisions, and procedural integrity.

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International Porphyria Art Challenge

This contest ended on 6-1-2026 11:59 PM Eastern Time

International Porphyria Art Challenge

This contest will start on 4-15-2026 12:00 AM Eastern Time

This contest is not available in your location

International Porphyria Art Challenge

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