OTHERS

Hope is what keeps us strong with Spinal Muscular Atrophy

Other

Ayça Şahin

Believe in yourself

Hello! My name is Ayça Şahin, I'm from Istanbul, Turkey and I'm 21 years old. My brother and I were diagnosed with Spinal Muscular Atrophy (SMA) in 2004. I was just 7 and he was just 2. We were children facing these difficulties in life. SMA is a genetic, neurodegenerative disease that causes atrophy and eventually leads us to the loss of abilities, such as walking, standing up, climbing stairs, raising your arms, and even breathing in some cases.

When we were diagnosed, there was no treatment but our parents kept us strong and hopeful. The disease is progressive. My brother has been using a wheelchair for approximately 6 years. I cannot stand up from the ground and standing up from the chair is really difficult. I cannot use the stairs and I get tired when I walk. While SMA steals a lot, I managed to win in my life, and I have never given up. I have grown up among many with diseases. I saw lots of patients at hospitals and physiotherapy centers. We have waited for medicine for years, thus I know how people wait for treatment and hope. That's why I decided to study genetics. I want to find treatments for incurable diseases and I want to give people hope. FDA approved the first treatment for SMA named Spinraza (Nusinersen) in December 2016. Turkey has now approved Spinraza for SMA Type 2 and Type 3 patients (it was approved for SMA Type 1 patients in summer 2017.)

I am a warrior, I am an SMA patient, I am a future geneticist, a future scientist. With Nusinersen, the progression of SMA will cease and I will walk more freely, I will regain some abilities. My brother can walk again! Surely, we need time for improvements. Time was our enemy when there was no treatment for SMA. But now time will be our friend. We will be stronger with Nusinersen. I promise to be the hope of patients. I will never work for money. Money will never enslave me. I will work for people. My enthusiasm will be the hope since my motto is "Dum Spiro Spero", which means "while I breathe I hope." Believe in yourself, be hopeful, and never give up. This way, there is no way to you fail. Always remember, the best days are yet to come.

EMPOWER OTHERS!

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