GIVLAARI | Amalia’s Story

Through the Paintings

Amalia found escape and even therapy in her art as she fought through the pain and confusion of her unknown illness to finally obtain a diagnosis of Acute Hepatic Porphyria (AHP), and ultimately, find a way forward by leaning on support from her family and friends and starting treatment with GIVLAARI® (givosiran).

This site depicts Amalia's experience with acute hepatic porphyria (AHP). Each person with AHP may have a different experience.

These are the paintings of her journey.

ARTIST BIO

Amalia was a joyful, excited college freshman when acute hepatic porphyria (AHP) turned her life around. On her first day of classes, Amalia woke up with nausea and flu-like symptoms, and eventually, she was admitted to the hospital. There, her grandfather mentioned a strange disease called porphyria that ran in the family, leading to Amalia’s diagnosis of AHP.

Over the next year, Amalia lived in denial of her disease. She buried her feelings, went back to school, and tried to put AHP behind her. During Amalia’s sophomore year, however, she began experiencing cyclic attacks and had to be hospitalized every month.

Amalia finally realized she had to accept AHP—she decided to take the next semester off and focus on her health.

With the support of her family, friends, and doctors, Amalia started treatment with GIVLAARI® (givosiran). She and her doctor discussed the risks of GIVLAARI, including the possibility of a severe allergic reaction, liver problems, kidney problems, and injection site reactions. GIVLAARI can also cause increased levels of homocysteine (a type of amino acid) in the blood.

While nervous if GIVLAARI would work for her, Amalia was at the same time excited to try GIVLAARI. She started treatment with GIVLAARI and now experiences fewer AHP attacks. When receiving her injections, she has experienced injection site reactions and nausea. This is Amalia's experience with GIVLAARI, and others may have a different experience.

Amalia encourages others to take care of their health, and to reach out to their doctor to see if GIVLAARI is right for them.

Continue scrolling to view full Important Safety Information about GIVLAARI.

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CHAMPION

At 18 years old, every day seemed like it was 75 and sunny. This painting captured how I felt: nothing between me and the sunrise. Even without seeing it, you can sense the bright color and light on my face. I was ready to seize the day, independent and free, and couldn’t wait for my next adventure to begin. Unfortunately, the adventure didn’t turn out to be what I expected.”

PAIN OF THE ATTACKS

I had just started college when the first attack came out of nowhere. The pain was unbearable. And not knowing why was terrifying. And the pain kept coming. I couldn’t keep anything down, not even water. Three trips to the ER and still no answers. I pulled this painting from my heart: alone in the pain, every thought black and blue, with nowhere to turn. After months of searching, I was diagnosed with Acute Hepatic Porphyria (AHP).

FIGHTING THROUGH ATTACKS

I painted myself during this time: trying to claw my way back to health, but too weighed down, too exhausted. Now I had a confirmed diagnosis, but there was nothing that could prevent these attacks from coming. I eventually had to take time off from school; it felt like I was drowning and hope was lost. After every attack, I’d start to recover, start to gain weight, then I would get another attack and all the work I put in would be reversed. The painting puts you on the ground with me, unable to get up.

MY EXPERIENCE WITH GIVLAARI®: THE DIFFERENCE IT'S MADE

When my doctor mentioned the possibility of taking GIVLAARI® (givosiran), a drug indicated for the treatment of adults with AHP, it felt like the first sign of hope in a long time. We discussed the risks of GIVLAARI, which included serious allergic reactions, liver problems, kidney problems and injection site reactions. I felt hopeful that I might have a future with fewer attacks. Just after I started taking GIVLAARI the pandemic hit. My world had already come to a stop because of AHP, and now this. I decided to go for a walk to escape my room and clear my thoughts, and on the way, I came across this bush and its first flower. It surprised me with hope. It was a reminder that even when life looks grim, there is always hope.

FINDING MY STRENGTH

I finished my first semester of college without an attack. The two main side effects that I have received after getting this medication is I do get an injection site reaction. Sometimes I’ll get a little rash around the injection site and then I do sometimes get nauseous. I had gone for a walk as the sun was setting and felt this painting said it all: I had pushed forward through the pain and confusion, and now I could take a moment, the thankful underdog, and watch the sun setting on the chapter of my life prior to my diagnosis and treatment. I look forward to what tomorrow will bring. Please remember that this is just my experience, and yours may be different.