Most days, Shant Cimenian’s life is a very typical one. The 21-year-old Watertown resident attends UMass Boston and is looking toward life after college. However, some days, without warning, he will be thrown into writhing agony due to a rare disease.
Having an “invisible disease” can be a struggle, but Cimenian wants to share his story with others facing similar conditions to show them not alone. He has chronicled his experience in his first book, called “My Life, My Victory.”
Cimenian was born with Familial Mediterranean fever, or FMF, a disease that is found in people whose descendants are from that region, according to the National Institutes of Health, including Jews, Armenians, Arabs, Kurds, Greeks, Turks, Iranians, and Italians. When an attack occurs, it can cause fever, and pains in the abdomen, lungs, and joints. Cimenian said that his episodes consist of two to three days of constant pain.
His first episode took place when he was 9 months old, and doctors from Turkey were flown in to find out what was wrong. They discovered it was FMF. People have different reactions to the disease, but doctors determined Cimenian had the highest level of pain.
“When I was younger I missed a lot of school. I missed months, weeks of school,” he recalled. “I was very, very behind in school. Teachers and students had no idea what was happening.”
During the attacks, Cimenian said he endures a great deal of pain.
“Some last a week straight — just me screaming in pain, crying in pain,” he said.
When he was younger, Cimenian had attacks almost every week, but as he got older they have become less frequent — occurring three to five months apart. But they are still debilitating.
“I am a very active person. Being trapped, being on my bed for three days straight, where I can’t go to the bathroom myself, my parents have to carry me to the bathroom … I start to go crazy, being trapped in my room for so long,” he said.
Along with his book and being a college student, Cimenian helps his mother at the family’s childcare business. He also invested in a home in New Hampshire last year as part of his vacation rental company.
There is no cure available for FMF, but doctors provide treatments for kidneys, one of the areas impacted by the disease.
Some people with FMF have mild attacks, or sometimes don’t even know they have it, but the disease still impacts them.
“It affects their kidneys,” he said. “They find out they have kidney failure.”
Cimenian decided he wanted to share his experience to help people with invisible diseases, which are ones that are not outwardly visible to others.
“I’m not the not the only one,” he said. “I felt like I was the only one, and I wanted to inspire people and let the know that they are not alone.”
“My Life, My Victory” emerged from writings Cimenian started when he was in high school.
“Actually, my mom bought me a book to write, that is how I got to really like to write,” he said. “I felt a lot better getting my feelings out.”
Completing the book took about five years, he said, and it will soon be available.
“The design is finished. I am finishing a few things, and finally the last steps is putting it on Amazon,” he said.
Cimenian said the release date is scheduled for Dec. 14, 2023.
He hopes his story will inspire other people facing invisible diseases.
“It’s a book for them to find strength to get through what they are going through,” Cimenian said.
The book is available by clicking here.
This is wonderful that you are sharing your story. You are a brave soul in so many ways. Thank you! I hope they find a cure so that you will not have to endure the pain anymore. God Bless
Thank you for telling your story, Shant! It illustrates why thousands of us devote our professional lives to working in the biopharma industry. We do it for patients, and we talk directly with them and their physicians to better understand their needs. A “cure” will not be possible until the underlying biology of the disease is better understood and targeted therapies can be developed to inhibit or silence disease-causing genes/cells/molecules. Until then, patient stories and books such as this one are a great idea to spread understanding among the public. Shant should not suffer alone.