Thriving from a Rare Genetic Disease: Shant Cimenian’s Memoir My Life, My Victory

My Life, My Victory by Shant Cimenian is an illuminating and heart-wrenching story of how a person suffering from FMF can thrive despite the excruciating pain brought by the rare genetic disease.

/EIN News/ -- Watertown, Massachusetts, July 05, 2024 (GLOBE NEWSWIRE) -- In Shant Cimenian’s now-published memoir My Life, My Victory, the debut author uncovers the silent despair of living with the rare genetic disease Familial Mediterranean Fever (FMF). Shant was inspired to detail his fight with this ‘invisible illness’ that has few physical manifestations. Shant, who has been suffering from this condition since he was a child, is determined to raise awareness about the impact of FMF and support the well-being of those who have an ‘invisible illness’. The memoir My Life, My Victory was published on Amazon last December 11, 2023, and is available online.

Shant Cimenian

FMF is an incurable autoinflammatory genetic disorder characterized by recurrent episodes of fever typically accompanied by chronic pain in the chest, abdomen, and joints. People suffering from this rare genetic disease usually start noticing symptoms after turning two years old. Although people with FMF experience excruciating pain due to their illness, their condition is difficult to recognize. For Shant, who was raised in the United States, American doctors lacked critical knowledge about the disease because of cultural barriers. FMF is most commonly experienced by individuals with Armenian, Turkish, Arab, Jewish, and North African ancestry. As a result, much of the research on this condition exists outside North America. This was a major reason why Shant struggled to receive proper care from American medical professionals.

In My Life, My Victory Shant shares the ups and downs of his journey in battling FMF, which started when he was only nine months old. His parents became concerned about their son’s well-being once they realized how often and intensely he would cry. After working with multiple medical professionals, the Cimenian family finally discovered what was plaguing Shant. His FMF diagnosis was deeply painful for Shant’s family because several other relatives also suffered from this complex, painful condition.

Shant’s days playing with friends and enjoying time with family were soon replaced with frequent hospital visits. His pain was reaching abnormally high levels and doctors soon realized that Shant’s FMF was rarer and carried more intense pain than the normal condition.

My Life, My Victory encompasses a bigger story than rare genetic diseases. It serves as a reminder that physical and mental boundaries are always surmountable with the right mindset. Most individuals will never experience the level of pain Shant and other FMF patients have, which is why his story shines a spotlight on the resilience of the human spirit.

Aside from the crippling physical pain Shant experienced daily, he often felt isolated and resentful toward his seemingly ‘broken’ body. These thoughts developed early on because Shant spent most of his time in hospitals where he was poked and prodded by some of the most talented doctors. Rather than feeling safe in their care, Shant began feeling suicidal and contemplating ending his life. On top of his medical struggles, Shant’s battle with mental health was another burden he was forced to carry. Coming from an Armenian family, where mental health is a taboo subject, Shant felt unable to share how FMF was impacting his life with loved ones.

However, his faith in God and strong familial support were two of the biggest things inspiring him to keep going. This was extremely challenging because many friends, family, and even strangers would comment hurtful things about how FMF would never allow Shant to live happily. Now a successful businessman and author, Shant reflects on the struggles he has overcome in his memoir.

My Life, My Victory is a valuable tool for educating society about FMF and encouraging them to look beyond what their eyes can see, as not all pain is visible to the naked eye. Shant’s compelling narration emotionally engages those with FMF and any other individual who recognizes the triumph of surpassing physical and mental limitations.

aims to inspire people suffering from FMF and other conditions to stop living in the dark, offering solace and understanding. The memoir is a testament to Shant’s resilience, showcasing that anyone can reach that light on the other side of the tunnel if they remain steadfast in chasing their dreams.

“Considering the obstacles I have faced in life since I was a child, I have unique insight into the silent battles millions of people are fighting each day,” Shant says. “Being diagnosed with FMF at such a young age and experiencing an ultra-rare form of the disease has enabled me to see life from a different perspective. My experiences have taken me to some of the darkest spaces, but my ability to overcome these challenges showcases the importance of recognizing and providing support to individuals with FMF and other conditions that are deemed ‘invisible’. If I could say one thing to young people suffering from incurable conditions, it would be that nothing is permanent in this world, not even this crippling pain.”

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