Grasping the Reality of Evrysdi, a Breakthrough Treatment

Grasping the Reality of Evrysdi, a Breakthrough Treatment
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I have never been a morning person. My family, friends, co-workers, and pretty much anyone that has ever met me can tell you this is true. But on rare occasions, I’ll wake up quickly without wishing for just a few more moments of sleep. Last week was one such occasion.

My mom walked into my room to start getting me ready for the day, but on this particular morning, she was carrying a large box that had just been delivered. The sight of it instantly pulled me awake. I knew it was supposed to arrive that day, but I hadn’t known what time.

My mom and stepdad gathered around my bed to begin unpacking the box. My mom commented that going through the many layers of protective packaging was similar to opening a Russian nesting doll. After removing many ice packs and several smaller boxes, we found what we anticipated would be inside: my new medication.

Evrysdi (risdiplam) is the first medication for treating SMA that can be administered orally or through a feeding tube. It is the first SMA treatment I am able to receive. In a previous column, I wrote about why I was unable to receive another available treatment, Spinraza (nusinersen).

Evrysdi has been a hot topic in the SMA community lately, and I’ve had quite a few conversations about it. After finding out that I had been approved for it, I mentioned to a friend during one of these conversations that I didn’t think it would seem real until I held it in my hands. But I’ve discovered that even while holding it, my mind has a hard time grasping the fact that this medicine is real.

I’ve never doubted that SMA would one day be treatable. My family and I have spent countless hours trying to bring awareness to this disease, as well as working to raise money to help fund the research and development of these treatments. I have even donated my own blood to be studied for the purpose of helping others with SMA.

I was sure a treatment would be created. I just didn’t know it would be within my lifetime, or that I would be one of the people to benefit from it.

I think I spent a day or two in some sort of shock after the eagerly awaited package was delivered. Since then, the reality of the situation has started to set in, and the shock has begun to fade away into the realization of this actuality. It really is happening.

Living in a world where multiple options for treating SMA exist is a blessing that I do not take for granted. Being able to receive one of those treatments is another blessing I will never fail to appreciate.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

Halsey Blocher a young woman who has Spinal Muscular Atrophy (SMA) type 1. Halsey is an avid reader and enjoys art and crock pot cooking. She is an enthusiastic volunteer at Turnstone Center for Children and Adults with Disabilities where she is also a client. She is now pursuing her writing dream by writing the SMA News Today column, From Where I Sit.
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Halsey Blocher a young woman who has Spinal Muscular Atrophy (SMA) type 1. Halsey is an avid reader and enjoys art and crock pot cooking. She is an enthusiastic volunteer at Turnstone Center for Children and Adults with Disabilities where she is also a client. She is now pursuing her writing dream by writing the SMA News Today column, From Where I Sit.
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2 comments

  1. dante says:

    All these drugs are nice but will they improve our lives? Patients should honestly speak of their outcomes and report on this site.

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