Meet Selenay, VP warrior
"It started with severe abdominal pain, followed by constant nausea and vomiting. I became unable to eat properly and lost 18 kilograms in a very short time."
-Selenay, VP patient.
My name is Selenay, and I am from Türkiye. I have Variegate Porphyria (VP).
My journey with porphyria has been extremely difficult. My symptoms started more than two years before I was diagnosed. It started with severe abdominal pain, followed by constant nausea and vomiting. I became unable to eat properly and lost 18 kilograms in a very short time.
As my condition worsened, I was admitted to the intensive care unit. During my illness, I developed painful skin rashes and wounds on my body. I also experienced urinary retention and had to live with a urinary catheter for a period of time.
Selenay at the hospital.
Living with porphyria affects every aspect of my life. Physically, I experience severe abdominal pain, migraines, weakness, nausea, and other symptoms that can appear without warning. During attacks, I often need emergency treatment or hospitalization.
Because of my illness, I have missed a lot of school and many important moments with my friends and family. Emotionally, living with such an unpredictable disease is exhausting. Every day, I wonder if it will be a normal day or if another attack will change everything.
The hardest part has been losing the feeling of having a normal life. I have spent much of my teenage years in hospitals instead of enjoying them. Not knowing when the next attack will happen makes it difficult to make plans or feel completely safe.
Even so, I refuse to let porphyria define who I am.
Because porphyria is a very rare disease, many healthcare professionals had never treated a patient with it before. There were times when my symptoms were misunderstood or not taken seriously at first. Having to explain my illness over and over again was difficult. I also realized that many people have never heard of porphyria, which is why raising awareness is so important to me.
Some moments will stay with me forever. I have experienced attacks so severe that I needed intensive medical care. I also went through life-threatening allergic reactions that required multiple adrenaline injections and treatment in the intensive care unit. Those moments were frightening, but they also reminded me how precious life is and how important it is to never lose hope.
Selenay’s hand with blisters and wounds.
During difficult moments, I try to take one day at a time and remind myself that I have survived difficult attacks before, so I can get through them again.
Playing the piano is one of the things that brings me the most peace. When I play, even for a short time, I can forget about my illness and focus on something beautiful. Music helps me express emotions that are sometimes too difficult to put into words. Celebrating small victories, staying hopeful, and believing that better days will come also help me keep going.
My family is my greatest source of strength. They have stood by me through every hospital stay, every treatment, and every difficult day. Their love has carried me through times when I felt like giving up. My faith also gives me comfort and hope, even during the darkest moments. Knowing that I am loved and supported gives me the strength to keep fighting.
Connecting with the porphyria community has also reminded me that I am not alone and that there are people around the world who truly understand this journey. When I first discovered this international community, I felt hopeful for the first time in a long while. Being able to meet other patients, share experiences, and learn from people who truly understand this disease means so much to me.
Porphyria has taught me that I am much stronger than I ever imagined. I have learned patience, courage, and resilience.
“Even after the hardest days, I have always found a reason to keep moving forward. This journey has changed me, but it has also helped me appreciate life much more deeply.”
Selenay playing the piano.
To anyone who has recently been diagnosed, I want you to know that you are not alone, and there is always hope. Being diagnosed with a rare disease can feel overwhelming, but your life is not over. Learn as much as you can about porphyria, ask questions, trust healthcare professionals who understand the disease, and never lose hope.
Even on your hardest days, remember that you are stronger than you think.
I wish more people understood that porphyria is not "just a stomach ache" or something that can be seen from the outside. It is a serious, unpredictable, and life-changing disease that affects every part of a person's life.
Greater awareness can lead to earlier diagnosis, better treatment, and more understanding for people living with porphyria.
If sharing my story helps even one person feel less alone or receive a diagnosis sooner, then every challenge I have faced has been worth it.
Selenay’s story with VP.
Want to share your story? Contact us at katri@porphyria.org
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